Putting our children on the internet

A majority of people I know have children. Some have had children very recently, others have older kids. Most of them share photos of said children on social media on a regular basis, because they want to share with their friends the joy that having children brings them. It’s nice to see pictures of children having fun, achieving things, clowning around. And it’s awesome to see parents showing pride and joy in that. I like seeing how my friends’ kids are doing and watching them grow at a distance if I don’t get to see them often in person. Children being children is a wonderful thing that can bring a real spark into our lives. So far so good.

Some people, however, do this in a way that I feel oversteps an important line. Not all their photos are of their children looking happy or engaging in fun activities. Sometimes, we see pictures of sullen-looking children in the act of being told off for some misdeed (how do you even take a photo of someone in the middle of telling them off?); I even once saw one of a child who’d had a bathroom-related “accident,” shared in an “oh, you!” kind of spirit. Some parents post several of these per day. Some of them go viral. I have seen maybe 5 different parents sharing this sort of picture in the last couple of weeks. Other times, it’s the sheer quantity of photos shared that makes it feel a tiny bit skeevy. It’s as if we’re given a window through which to watch the every move of a child who isn’t ours. Without them knowing they’re being watched. Bit creepy, no? I mean, what’s the big difference between someone you hardly know watching your kid through their bedroom window and someone you hardly know seeing hundreds of pictures of your kid in their bedroom? Wouldn’t that Peeping Tom bother you just a tad?

Let’s face it, parents will take embarrassing pictures of their children. It’s a fact of life. But would you be happy if someone shared tens or even hundreds of pictures of you online without your knowledge, or shared pictures of you as part of a punishment or in an embarrassing situation, with a bunch of strangers, friends and family on the internet? I mean, how many of your Facebook friends do your kids know personally? How many do you know personally? How many would you be comfortable joking with about wetting yourself? Would you post a photo on Facebook of yourself in the aftermath of a Bathroom Accident?

You may well be thinking, “but that’s silly: all children have Bathroom Accidents. It’s a kid thing and nothing to be ashamed of. It’s different for adults.”

Yeah. So is deciding whether you want your photo on the internet. The difference is that you as an adult get a say in the matter. Children are just as capable as adults of feeling shame and embarrassment and I think a lot of adults forget that sometimes.

I was a really shy and easily embarrassed kid. Even at the age of five or six, I was too embarrassed to answer when an adult who was responsible for me (including parents) asked questions in a medical context about my body or my bathroom habits. I would have wanted to die of embarrassment if I’d wet myself and someone had taken a picture, let alone shared it with others, and I would never have forgotten it. That may have something to do with the fact that many children are brought up to be ashamed of their bodies (something I’d like to avoid with my own children), but it also shows that you can’t assume someone will be OK with something potentially embarrassing just because they are a child. Incidentally, I also HATED having my picture taken, but was often forced to have it done anyway. It’s hard to avoid these days, but at least adults generally get to have a say in who puts what pictures of them on the internet, to an extent at least. And if that’s violated, then we get to kick up an almighty fuss, and quite right too.
Some of my Facebook friends don’t even have their privacy settings restricted on these kiddie photos – which in some cases means that they can potentially be seen and shared by pretty much anyone.

I know for sure that if Internet photo sharing had been a thing when I was a child, I would have grown up very uncomfortable with the knowledge that there were hundreds of photos of me that had been put online and shared without my permission. Babies and little children aren’t able to consent to that, because they can’t possibly understand the scope of it. And I bet they are rarely asked!

The point that I’m making here is not along the lines of ZOMG WON’T SOMEBODY THINK OF THE CHILDREN WHAT IF A PERVERT SEES THEM!!!!11111!! No. It’s about consent. What I’m saying is that just because someone happens to be your child does not give you the right to publicly humiliate them in front of an audience consisting of people they know very well right down to people they have never even heard of.

Obviously, there are times when parents have both a right and an obligation to consent to things on behalf of their children. An obvious example is medical procedures that we can’t expect young children to understand the implications of having or not having. And we have to make countless decisions on our children’s behalf, from what clothes they wear or how their hair is cut before they’re able to articulate their choices, to where they go to school. I’m not saying we should treat our children like adults, because often they aren’t capable of making certain informed decisions for themselves. But I think it’s a good idea to ask ourselves firstly, do I have to make this decision about my child without any input from them? And secondly, is this something I would be comfortable with if someone did it to me without my consent or knowledge? Is it really, honestly in the child’s best interests?

I was reading a page on this website about common behaviours and beliefs exhibited by toxic, controlling and abusive parents and some things resonated particularly strongly with me. One was the idea some of these people have that being someone’s parent automatically gives them permanent authority over that person, even after they have become an adult. That they don’t need to discuss personal boundaries and comfort zones with their children or seek their opinions when making decisions for them. For these people, “I am your mother/father” is permission enough. Even when their children are adults living autonomous lives, they still think it’s OK to try and control them with “I am your [parent] so you have to do what I say.” And another was a series of behaviours and attitudes indicating that these parents apparently saw their children as possessions, or extensions of themselves, rather than discrete human beings with their own minds and feelings. Some of it felt rather familiar.

Let me make it very clear that I do not, in any way, think that sharing pictures of your children on Facebook is abusive or that tweeting about their misdemeanours makes you a toxic and controlling parent. I am merely concerned that we are gradually and subtly moving towards a culture without boundaries when it comes to what we share of our children’s lives, and I wanted to think about the potential impact that may have on them further down the line. And I am not blaming parents for this, because it is so insidious. I’m blaming our cultural shift in the way we communicate about our lives. Social media have gradually made us pay less and less attention to our own personal boundaries, sometimes to the point where we share REALLY personal stuff that we wouldn’t normally. We’ve all seen a Facebook post that makes us think “ugh, too much information!” So by extension, we think less and less of doing the same with our children’s personal stuff, the key difference being that it is still us making the decision of how much we share rather than the person we are talking about or sharing pictures of. Will getting into habits like this make us less respectful or mindful of our children’s autonomy, consent and boundaries further down the line?

Sometimes I wonder for whom the embarrassing or shameful picture I see is being shared: for the child’s benefit or the parent’s? Usually the parent’s, right? It can be cathartic to share your frustrations, certainly. Or you can get kudos for making people laugh. But is it OK to use photos of someone else publicly for your benefit and entertainment or to publicly humiliate them into not doing whatever it was again? Or is that symptomatic of the risk of becoming the sort of parent who thinks they own their children or doesn’t need to respect their boundaries?

I would never dream of telling people how to bring up their children or judging how they do it. If you’re a parent and you’re someone I know, then I guarantee that I don’t think you are a bad parent because I don’t think that about anyone I know. But I think we all need to be mindful of the direction we are moving in.

What are we saying about our children if we constantly share photos of them, bragging about how cute they are? If we don’t ever do that in the context of their own views and personalities are we not basically treating or appearing to treat them as decorations or accessories? If I can share this embarrassing picture of my kid, can I say that’s fine because he’s my kid and I am OK with it myself so by extension he has to be as well? I mean, isn’t that kind of dehumanising? Isn’t it a bit of a bad habit to get into? Might it eventually make us sometimes forget that our children ARE human beings separate from ourselves?

Of course I wouldn’t look at someone’s Facebook feed and assume that because there are sooooooo many pictures of their kids there, they will end up violating all said children’s boundaries for the rest of their lives. Absolutely not. It seems to be the norm at the moment. I just think we ought to consider what we’re saying to ourselves, our peers and our children when we make their private lives so public without giving them any choice in the matter.
In future, when I’m tempted to share pictures of and information about my child(ren) in a public place, I’d like to think that I will first stop and consider whether I would share the same information if it were my partner or my friend rather than my child and they found out about it. Would they be upset or angry that I’d shared 300 photos of them within a month or that I’d told everyone about the embarrassing thing they’d done? If not, no problem. Yes, children are different from adults, but let’s remember that they will one day become adults and how we treat them as children will have a direct effect on how they treat themselves and others as adults.

I think we also misjudge children’s comfort zones quite badly too. Aside from blithely sharing their personal information and photos with the world, how often do we carry on tickling a child who is shouting stop, or make them hug and kiss a relative they don’t like? My concern is that by doing this (because we can, because we have so much power over the child), we are basically teaching them that they don’t have a say when it comes to their personal boundaries because adults get to dictate them. They don’t have a say in whether they’re comfortable with something happening to them if it’s a relative or close family friend doing it to them.

Oh, and by the way: 80% of child abuse is perpetrated by a relative or close family friend. You see where I’m going with that, right?

Let’s consider the implications of bringing our children up with constant messages that it’s OK for those people not to consider their wishes when it comes to personal information, photos, tickling and kisses. We tell them to be wary of strangers who might do things they don’t want them to do, while simultaneously doing other things to them that we haven’t checked they are comfortable with. By that, of course, I mean things we don’t HAVE to do to them. Obviously you are not going to ask your kid’s permission (as such) before you give them a bath, although it probably won’t hurt to check what they are happy with you doing at each stage of the bath and whether they’d prefer you to do it differently, depending on the child. But that’s beside the point and I’m not here to tell people how to bathe their children. Obviously sharing a few holiday snaps online is not going to prime your child to be a victim of abuse, especially if they don’t know about it. But there is nothing wrong with considering where your boundaries are and how your child might feel about what you have shared about them and with whom, once they’re old enough to understand how the internet works.

Autism: It’s not a disease

Most people are familiar with this story to some degree. In 1998, a surgeon and medical researcher called Andrew Wakefield published a research paper claiming to have discovered a concrete link between the combined measles, mumps and rubella vaccine (MMR) and the development of autism. Because autism tends to show itself around the same age that the MMR vaccine is administered to young children, this made intuitive sense to a lot of people and sensationalist stories spread like wildfire.

No other experts succeeded in replicating these findings. In fact, there was no sound scientific basis at all behind the original claims. We already knew that autism is developmental and is likely to have some genetic basis. Even Wakefield himself eventually admitted that he falsified his data and that his claims were nonsense. He was struck off the medical register and is no longer allowed to practise.

Yet somehow, the myth has persisted even though its very originator has debunked it along with a lot of more conscientious and reliable sources. Influential people (like Donald Trump, who recently tweeted about a “healthy” child who “doesn’t feel good and changes” in reference to the child somehow apparently acquiring autism after receiving a vaccine) persist in spreading and perpetuating these false claims for reasons that clearly have no relationship with reality. The damage they are causing and have caused is grave.

In the USA last year, measles cases reached a 20-year high because parents were refusing to have their children vaccinated. The disease had been declared eliminated there in 2000, yet in 2014 there were 288 cases reported between 1 January and 23 May alone.

Measles can kill. That’s why we have a vaccination. But the decrease in vaccination means that communities are losing their herd immunity, a group resistance to a disease brought about by immunity in the majority of the population. Previously, this has worked well to protect babies who are too young to be vaccinated but are especially vulnerable due to their undeveloped immune systems, and those who are unable to have the vaccination for various reasons. Now, those babies and children are potentially dying of measles because of irresponsible and ignorant parents refusing to have their children vaccinated. Remember this is all based on an entirely groundless, falsified claim backed up by fraudulent data.

The justification for all of this is supposedly to protect children and families from autism. It is very difficult to understand how parents could possibly prefer to take the risk of having a dead or gravely ill child (and putting other babies and children at risk of serious illness or death) over that of having an autistic child. Why would they do this? Autism is not a disease and cannot possibly be fatal. So what’s the big deal? What’s so terrible about autism that it’s a worse prospect than death?

When the MMR/autism story first broke, general knowledge of autism was low. Most people didn’t really understand what it was, unless they knew someone who was autistic or had an autistic family member. The media swooped in quickly to fill this gap, sadly doing so with toxic and exaggerated information because that’s what sells. They told stories of how families’ lives had been ruined by autism and generally painted a picture of autism as some terrible monster that turned children (always children) into aloof, mysterious creatures who were incapable of loving, observing basic social rules or communicating with their families or indeed anyone. Autism, they told us, equals heartbreak and broken families; an autistic child will remain forever locked inside himself and inaccessible to his loved ones and faces a bleak and lonely future with no independence or fulfilment. That’s what people were told, so in the absence of other information, that’s what they believed. Families grieved the “loss” of this person locked inside himself or herself, not realising that the autistic person they saw was in fact a whole person in himself or herself and there was no “other child” hiding inside.

The result is that autistic people are to this day stigmatised, misunderstood and marginalised. That’s why I use the term “autistic people” rather than “people with autism.” The latter may abide by “people first” principles (usually a good thing but not always) – in other words, we are people first and autism is a secondary characteristic – but “with autism” implies that it’s something you can have or acquire, like an illness. In fact, it’s just a word to describe someone whose brain works in a certain way, like a personality type. You wouldn’t say “people with tallness” or “people with extraversion” but you WOULD say “people with measles” or “people with ‘flu.”

(Side note: I have also stopped using the word “neurotypical” or NT, which a lot of people use to describe all people who aren’t autistic. I think that term is misleading. It implies that all non-autistic people are more similar to one another than they are to people who are autistic, as if there were a sharp divide. If you took away all autistic people from the world, could you then say that everyone left was “typical,” a homogeneous group whose minds worked in the same ways? Of course not. Lots of people stand out within various groups without being autistic. People with dementia or severe schizophrenia or Parkinson’s disease could hardly be called neurotypical, for example. The word essentially implies that there are two types of people: autistic people and normal people. That doesn’t help the cause.

“Autistic” itself is misleading enough, with its implication that autistic people are autonomous, alone, not able to relate to others; using “neurotypical” deepens that perceived divide. A newer term I have recently come across is allistic. That simply means “not autistic.” The term was created by autistic people and is becoming more widespread. I prefer to use that.)

Let me share a very personal story now. I was diagnosed with Asperger’s syndrome at the relatively late age of 26. The lateness may have been partly because any autistic traits I had as a child were overshadowed by those of my brother, who is more “typically autistic” than I am and also has a learning disability so it is far more obvious in him and probably made me look a lot “less autistic” in comparison. I had sought a diagnosis because I’d felt out of step with my environment and other people all my life. I was a very unhappy child who yearned to be an adult so I wouldn’t have to worry about standing out in the playground and being bullied because I didn’t know how to relate to other children. In secondary school, I dreaded going in every day because I couldn’t work out what was stopping me doing my homework despite really wanting to do well and I was always being shouted at and humiliated by the teachers for it, although I performed consistently well in classrooms and exams. As a young adult, I was miserable because I couldn’t work out why my romantic relationships kept failing and I wished I were older so people wouldn’t patronise and talk down to me so much. Now in my thirties I am happier and more comfortable than I’ve ever been before and looking forward to the future in a more positive way. That is partly down to that diagnosis giving me an opportunity not only to understand myself better but also to enter a community of people who had experienced similar struggles to myself. I’m not necessarily advocating diagnosis, which can cause a lot of problems under some circumstances. You are who you are, with or without one, and the choice to seek one or not is entirely personal. It was a good thing for me, but not for everyone. Some people feel that labels will hold them back, and that’s a valid opinion for those people. Others don’t have a choice, because they’re children or severely disabled because of their autism or have an accompanying learning disability. Those people don’t get to make the choices and changes I discuss in this post, but they still suffer from the attitudes – much worse so, in fact. I’ll be looking at disability another time.

For me, the most powerful thing about the diagnosis was that I had it, it was mine and I didn’t have to share it with anyone. It was validating: it told me “it’s OK to be you after all, despite the messages you have been getting all your life. It’s OK because there are reasons for you being different.” I used my diagnosis as a lever to catalyse my personal journey. I used it to become more self-aware, to recognise when I was doing things that bothered other people and when I was damaging my own relationships. My ability to maintain romantic relationships was transformed completely. Before that, I’d had hardly any that lasted more than a few months and only one that had made it to a year. For a 26-year-old who wanted to be in a relationship, that wasn’t a great track record and didn’t help my self-esteem when so many of my peers were moving in with their partners and getting married. But then my first relationship after the diagnosis lasted a year and a half. My next proper one, which wasn’t long afterwards, was with the person I would marry four years later and start a family with. The diagnosis allowed me to really examine what was going on with who I was and to make positive changes to my life. I didn’t need a romantic relationship. I needed a better relationship with myself.

One change I made was about the way I saw myself. Previously, I had worked and worked for many years to fit in, to appear as much like everyone else as possible. I worked so hard to suppress my true self and learn “normal” habits that now people are often quite surprised to learn I’m autistic. I wanted to reclaim the place in society that they had told me all my life wasn’t rightfully mine, because I was different. I learned social rules by rote, where other people seemed to absorb them by osmosis. I read self-help books about relationships and communication. I figured out ways of doing everyday tasks that gave me the same results other people got. I took responsibility for my own life, rather than blaming others for making things hard for me or saying “this is just the way I am and it isn’t fair: look at how much I struggle! Life is SO HARD and there’s nothing I can do about it!” How disempowering those attitudes can be. I know, because I often used to feel that way.

Years ago, I felt that my diagnosis somehow validated me, gave me an explanation for being “different” and allowed me to show others that I wasn’t a weirdo, I was just autistic. Now I know that I don’t need to make excuses for who I am. The diagnosis gradually helped me realise that I don’t need to change to make myself look more like other people. I can “fit in” without sacrificing my own identity to look the same as everyone else.

Autism is part of my personality and part of my identity. Our personalities aren’t something to hide and be ashamed of, despite what the world may have been telling you all your life. We are all who we are, and that is something to be proud of, especially if we work hard to be good people as much as we can. I am gradually reclaiming my autistic identity, behaving in less and less artificial ways to disguise my differences. I don’t have to pretend I’m happy in a crowded bar with loud music that literally hurts my brain with the sensory overload. I don’t have to suffer for appearances’ sake: it is OK for me to make as much of an effort as I can and then say “I’m struggling to cope with the atmosphere in here so I’m afraid I will have to call it a night.” I don’t have to make a phone call (something I really don’t cope well with) when the intended recipient is happy to receive an email or text, just because other people would make phone calls in the same situation. And I don’t have to make eye contact with strangers or even friends, something that feels as uncomfortable and unnatural to me as a prolonged electric shock.

Granted, there is a balance to be struck between saying “this is who I am, and I am proud” and “this is who I am, so screw you and your needs!” I have known people who use their autistic identity less constructively. One person I know has a habit of saying “It’s not my fault: I’ve got [Asperger’s] syndrome” to dismiss anyone who calls them out for behaving in a self-centred or hurtful way. Obviously it’s damaging to people who are being hurt by that sort of behaviour, but arguably it’s more damaging to that person if they are seeing their autism as something that makes them behave in ways they can’t (and therefore needn’t try to) control, rather than taking these opportunities to learn and grow. And it really can’t be helping the general public’s perception of autism.

(Ironically, that person actually fell below threshold on a diagnostic test they took, meaning they are not “officially” autistic at all. But I think it’s perfectly OK to identify as autistic if that makes sense to you and fits in with your reality. It’s just not OK to use it as an excuse for your behaviour without acknowledging your own responsibility for said behaviour and for learning when you need to learn.)

Either way, our identities are really nothing to be ashamed of. It’s a bit insulting to be told implicitly by parents who refuse to vaccinate their children that they would rather have a dead child than one like you. And largely thanks to the media, we have to spend a lot of time correcting misconceptions and dealing with people who think autism is some horrible nasty evil thing that wrecks lives. Yes, someone who is disabled as well as autistic (and their families) will experience different struggles and of course this is what anti-vaxxers are scared of. But the anti-autism attitude does us all a disservice.

Lots and lots of people have responded to me telling them I’m autistic like this: “Surely not! You don’t seem that way at all!” And then, in a congratulatory tone, comes: “You hide it really well!

Hide? Well? Um, thanks a lot for that.

How about recognising that autistic people don’t all look the same and might not meet your preconceived notions of what they should be like? And that it isn’t something we should be hiding, or feel that we should hide because of other people? How about considering the implications of praising someone for apparently hiding who they really are, because you believe that who they really are isn’t a good thing? That is not a compliment, no matter whether or not you mean it as one. And your intentions are all very well, but when you’re reinforcing a message someone has been receiving all their life that they are inferior and there’s something “wrong” with them that shouldn’t be spoken about, then the impact of your words is far, far more important than your intentions. If you say that to me, then what are you saying about my brother, who definitely “comes across” as autistic (according to the stereotypes) and couldn’t change that if he wanted to?

I was once out for a drink with a colleague I didn’t know well: we happened to be the last two left after a staff get-together. Somehow, it came up in conversation that I was autistic.

“You’re not autistic,” she told me bluntly. “What makes you say that?”

Well, thanks for telling me I’m wrong about who I am, Ms Colleague. Perhaps one answer to her question might have been “my diagnosis,” but I felt it was far more important that it was how I identified, part of who I was.

“No, but what makes you actually think you are autistic?” she persisted, as if my identity was simply not good enough for her.

I carried on trying to explain, trying to justify who I was to her, and she kept on interrupting to ask questions about why I “thought” I was autistic. In the end, I decided to simplify things by picking out some characteristics that people tend to associate with autism and give examples of how I displayed them. This made me EXTREMELY uncomfortable, but I just wanted to make her judgements of who I “really” was stop.

It didn’t work. My colleague listened to my examples and shot each one down in turn. “No, that doesn’t make you autistic. I do that. Lots of people are like that. Everyone has some degree of that. Why does that make you think you’re autistic? That’s normal.”

She wouldn’t stop, even when I realised I wasn’t going to be able to break through her prejudice and told her I no longer wished to discuss something that was a very personal subject for me, and wasn’t comfortable with my identity being dissected. She carried on regardless, until I was actually in tears and refusing to answer her because I was no longer able to cope with the interrogation.

Looking back, I could have asked her why she “thought” she was a Christian and argued that “Christians don’t do” certain things she did or that I, an atheist, did some things she did too and therefore she wasn’t a Christian. But I don’t think it’s constructive to fight ignorance with belligerence, so I’m glad I didn’t.

I think that’s quite an extreme example of the prejudiced responses we often get for sharing that we identify as autistic. A lot of it is simply because of how autism is portrayed in the media. So how should you respond when someone tells you they are autistic?

DO accept and believe what they are saying (or what those close to them are saying if they are not able to tell you themselves). No matter what you might think, you don’t know who they are better than they or their families do. Also, saying “no you’re not” is not a compliment, as if they’ve said “I’m so ugly!” and you’ve denied it to make them feel better. “Autistic” is not an insult or a matter of personal taste.

DON’T assume that the person (or their family) is saying they are autistic because they think they are “special” and want to be different. Autism has such a stigma attached to it that I’ve never known anyone to say they’re autistic when they’re not. That doesn’t mean nobody ever has or will, but starting out by assuming someone is lying is a bad idea. Try to keep an open mind. Oh, and I don’t mean people who giggle and say “sorry, I’m a bit autistic” when they actually mean “I’m a bit socially awkward” or “I’m a bit of a geek.” Those people need to stop.

DO try to understand where an autistic person is coming from if they don’t seem to realise they are being insensitive or hurtful. You can call people out – GENTLY – for using their autism as an excuse for bad behaviour that they can control BUT ONLY IF you know them and understand their autism well enough to understand what they can control and how much of it is just you getting offended because they don’t respond like an allistic person would. You are important too, but save this for people you have close relationships with. If they repeatedly disregard your feelings and shut you down with “it’s because I’m autistic” when you tell them so, gently explain that autism doesn’t stop them from listening and acknowledging that they have done something hurtful, whether or not they intended it. It is vitally important to do this tactfully, though. It might be that the person is very sorry and understands why they upset you and has already resolved not to do it again but is too embarrassed (because they are “different”) to be anything other than defensive. Calling them out might be, to them, highlighting the fact that they are “different” and can’t do social things as well as other people, in their view.

DON’T question someone about what makes them autistic or what “autistic things” they do. And for goodness’ sake, don’t ask if they have any “special talents.” That’s a stereotype and can be hurtful to us because most of us don’t have one and feel inadequate enough as it is in social situations. It can be hurtful to families who have struggled to bring up an autistic person in an allistic world and feel somehow inadequate as parents, even though they are almost certainly not. Tell them their son or daughter ought to have a talent they don’t have, and they will not be pleased. My brother has a remarkable ability to tell you the day of the week on which any date falls, but we didn’t discover he could do this until he was a young adult. Until then, we just knew he was great at spelling but couldn’t cope with basic maths or understand the value of money.

Remember it isn’t the autistic person’s job to educate you about what autism is. Unless it’s a question about how their autism has affected their experiences or other people’s treatment of them and you’re asking because you care about that person and don’t want to trigger any traumatic memories, then perhaps it would be better to Google your questions.

DON’T say “I’m sorry to hear that” or tell them they are good at hiding their autism. Autism is not a disease or something shameful. It’s hurtful to tell someone you’re sorry to hear about their personality or their relative’s personality, or that they’re good at hiding who they really are so they come across more acceptably in your eyes.

DO make the effort to find out what the person’s boundaries are, whether they can tell you themselves or you need to check with family and friends or observe to get the information you need. Autistic people often find certain situations unbearably overwhelming and may need the support of allistic people to navigate a world that isn’t set up to cater for autism. It’s hard to explain exactly how that intense discomfort feels, but it’s often an extreme fight-or-flight response that’s as urgent as when you can’t wait to get to the toilet, or (if you are very ticklish) someone won’t stop tickling you, or you have a really terrible itch that you can’t scratch – except by fleeing the situation. It’s more than just a dislike of a situation: it can be terrifying and traumatic.

The ways in which I experience these discomforts myself are quite common among autistic people:

  • I hate being touched, even if someone brushes past me, except by people I have grown to trust. That can be people I’ve known for a long time or not long at all and isn’t necessarily correlated with how much I like and respect them! I have friends I’ve liked and respected very much for several years but am still not comfortable with them touching me. I suspect that is because those people have never checked it’s OK in the first place and have just assumed it’s fine to greet me with hugs and kisses rather than gradually building up trust. If you know someone is autistic, it is best to either let them take the lead on initiating physical contact, or ask/offer it rather than forcing it on them (for example, by holding your hand out for them to take).
  • I’m very sensitive to sound and can get overwhelmed very quickly if more than one person is talking while I’m listening, or another conversation is happening across the one I’m having. Even if a television is on in the same room as someone talking to me, I find it difficult to pick out what they are saying. It’s probably for the same reason that I struggle to interpret what people are saying or formulate coherent sentences over the phone.
  • Similarly, too many visual inputs can be very overwhelming too. This is especially true when there are a lot of people moving in different directions and my brain is trying to process them all. If things are moving in predictable ways or in the same direction (like traffic) it’s fine, but people are very unpredictable! Crowded places are especially difficult because of the combination of visual, auditory and tactile stimuli and often I will just get myself out of the situation as quickly as possible. My least favourite places in the world are Liverpool Street Station and Piccadilly Circus. I know I am not alone among autistic people here!
  • Being the centre of attention, unless it’s entirely on my own terms, is something I’m really not OK with. I really hate situations where people gather round me and do “happy birthday” or “congratulations” routines even though that’s the polite thing to do. It could be that it’s because I know I’m expected to respond but have never really known how to. I found it horribly uncomfortable telling my family I was pregnant, because I knew I’d get a stronger response from them than from other people. (In the end, although it was VERY hard telling them, they have been fantastic about keeping their distance and not trying to get involved in my business.)

Everyone is different, but all of these are examples you might find in other autistic people, too. It’s not an illness, just one of many ways of experiencing the world. And it isn’t a disability unless the world contrives to make it one by expecting us to do things we are simply not equipped to do. Sadly, it does do this. But if we have to try so hard to change the way we think and do, then other people can surely do the same.

What Feminism Isn’t About

Recently, I mentioned to a close friend that I was a feminist. His response was, “No you’re not. You just care about things that matter.”

Well actually I am, and I’m proud to say it. But I think my friend had fallen into the very common trap of seeing “feminist” as a vaguely insulting label given to women who apparently annoy everyone by pushing a particularly militant brand of “feminism” and perhaps he thought I was putting myself down. Unfortunately, this stereotype usually involves women who hate men, screech about unimportant issues just to give themselves an advantage over men and long for a world where we no longer need men to reproduce so we can get rid of them all. Feminism has, in a lot of people’s eyes and largely due to anti-feminists and misconceptions, become a caricature of itself.

Ironically, that sort of “feminism” isn’t even feminism at all. Someone who hates men isn’t a feminist, they’re a misandrist. Someone who wants to rid the world of men isn’t a feminist, they’re a genocide fantasist. I see this as a form of anti-feminism in itself because it reinforces the idea that feminists are all extremists: unrealistic, unfair and a little bit unhinged. A lot of people who see all feminists in this way are the very same people who rightly insist that those who commit terror acts in the name of Islam aren’t true Muslims at all, or at the very least aren’t representative of Islam in general. It shouldn’t be a huge leap to apply that to feminism as well.

A problem that real feminists continually battle with is the fact that so many well-meaning and intelligent people genuinely think that feminists are strident man-haters who think women are superior and won’t let men be heard at all. Because of this stereotype, we’re often not taken seriously by people who actually care about the same issues we do, and others hastily add “but I’m not a feminist or anything” when expressing views that show them to be, well, feminists. That’s problematic because if we want to address a society-wide inequality, then we can only do that effectively by sticking together.

Why aren’t those anti-man people feminists? Well, because feminism means standing for equality for all sexes. Male, female, intersex, non-binary, whatever. It does NOT mean wanting women to become dominant in society or wanting men to be disadvantaged. Equality, of course, means having equal social standing and equivalent opportunities, not for everyone to be treated identically. Because we are all different. If this is what you stand for then congratulations, you are a feminist.

True feminism is fuelled by love, not hate. It has to be, because it’s about fighting for the rights of people who are being marginalised. And there’s a very valid argument that if those come at the cost of other people’s rights, then they’re not actually rights at all. Many people don’t seem to understand what “rights” means. Ever seen someone protest when they’re called out for verbally abusing or harassing someone by insisting that they have a “right to free speech”? Well, of course they do, but this isn’t it.

Feminism has achieved a lot over the years. In this country, women are now allowed the same property rights as men, rather than ourselves being considered property. We are allowed to vote. There are laws that require employers to pay us the same as they do men for doing the same work and not to discriminate against pregnant women and new mothers who need paid time off work. We even have female sports presenters these days! Goodness!

So what are feminists still “whinging” about, as many people put it? What’s our problem? We have achieved equality, haven’t we?

I wish I could say we had.

The trouble is, while we’ve been quite successful in getting rid of much of the blatant sexism in our nation’s laws and public institutions (although those employment laws I mentioned above aren’t exactly adhered to by all employers), it’s much harder to see that which is less public. Because we’ve shot down a lot of the bigger, more obvious things first (of course we did: they were huge and obvious), the lower-level, pervasive, insidious stuff is very much still there and is much harder to hunt down, trap and kill.

A brilliant example, or set of examples, to illustrate the pervasiveness of sexism in our society is Laura Bates’ Everyday Sexism Project. The project was set up to document the everyday occurrences of sexist behaviour that make life more difficult and uncomfortable for women on a daily basis. Many of them are incidents that might seem too small to make a fuss about on their own, but over time can get really hard to live with. These are the little things that add up to something big. Things that are really hard to raise because we run the risk of people laughing them off as petty and hence refusing to take us seriously about other matters.

Sometimes it’s really TINY things, like something that’s always irked me: maleness being used as a default if you’re not sure of the sex of the person you’re talking about. When you’re on the road and commenting on another driver’s behaviour, you’ll tend to refer to the other driver as “he” if you can’t see their face. If you’re affectionately referring to an animal whose sex you don’t know, it’s “he seems friendly!” or “look at his little face!” In fact, there are a lot of species whose female members you are far more likely to see than males: most spiders and bees you will see are female, but funnily enough I’ve noticed that if I refer to a spider or bee as “she” people go “She? How do you know it’s female?” whereas “he” elicits no comment because people simply don’t notice. Try it yourself! And if someone tells an anecdote beginning “my boss…” or “my doctor…” without using pronouns, people tend to assume they’re talking about a man.

Why does that matter? Because it unintentionally reinforces the idea that women are second-class, a mere afterthought to the men who are…mankind. That doesn’t help women’s fight to be taken as seriously as men. “He or she” may be a bit clunky and “they” is argued to be grammatically incorrect by some people who don’t understand that words change, so instead of interchangeably using male or female pronouns, we default to male ones. Wouldn’t it be nice if we had singular, gender-neutral pronouns for people in English? Well, we don’t, so tough luck to us and we will have to make do with the clunky, randomly chosen or grammatically dodgy alternatives!

The Everyday Sexism Project website has literally thousands of stories from women around the world showing how very real and problematic sexism is. If you’re not convinced that sexism is still a problem I’d recommend just taking a quick look. I’ll add that when I first started hearing some of the stories about sexual harassment, catcalling and so on, I did wonder “how is this sexist rather than just people behaving like dickheads?” I understood soon afterwards how much of this behaviour stems from the perception that women’s bodies are public property and men have the right to assert ownership or dominance and feel entitled to use (or threaten to use) our bodies as they wish. And that women have a responsibility to fulfil this wish, or be labelled cold-hearted bitches or worse, rejections are met with violence. And even worse, we’re not taken seriously when we protest. So yes, that is sexism.

To be fair, most people I’ve seen or heard expressing the opinion that feminism has run its course are men. Not being able to experience the above issues first-hand, they can’t always be expected to understand fully that there are still problems with sexism, unless we show them. I’ve seen many cases of men being surprised and amazed by demonstrations of issues they didn’t realise exist because they are so deeply ingrained in the way we behave or are tiny things you don’t really notice until they start mounting up and become a big problem. So we do need to carry on showing people, and I intend to do just that in this blog (not in detail today though).

However, a few of the nay-sayers have been women, one of whom even added that she thinks men are now disadvantaged.

I have news for those people: a lot of feminists these days are men. If things were equal and feminism actually put men at a disadvantage, then why would men want to be part of it?

The thing is, sexism hurts men as well as women and that’s part of the reason why we have to be inclusive when we campaign against it. If we expect women to be meek and submissive and never take the lead, then obviously that gives men an advantage in life but it also gives them a disadvantage. That’s because they grow up thinking that they are expected to seek no emotional support when they need it, that they are under no circumstances allowed to show their emotions, that they are expected to do all the work in taking charge of things and be in control (how exhausting!) and that they are expected to work their fingers to the bone in mind-numbing jobs for their entire lives without the “break” to raise children that women get (well, they do say a change is as good as a rest, right?). Because of ingrained sexism, it doesn’t occur to people a lot of the time that actually it’s just as valid an option for your children’s father to be the full-time parent while his partner (regardless of their gender) is the bread-winner. I know a few full-time fathers, or female partners of full-time fathers, and there’s no reason why it can’t be that way if it works out better. Usually, it’s because the man earns more to begin with or is given  better oortunities for career development so it makes more sense for him to continue: can’t we see the sexism behind that?

Not only that, but if we really want to tackle any inequality then we need to consider all (widespread) inequality. Sexism often assumes heteronormativity – that is, the assumption that everyone is heterosexual or that those are the only valid relationships – and is strongly tied with homophobia in that regard. Similarly, the homophobic stereotype of gay men as effeminate and somehow less than “real men” is also sexist because it carries the implication that femininity equals inferiority and that the more masculine you are, the better you are.

Think of how lesbians and bisexual women are often fetishized in ways that gay men are not (“oh that’s so hot: can I watch? Can I join in?”).

And if we think women have it bad, well, let’s just pause a moment to think about women belonging to minority ethnic groups who are often fetishized and exoticised as well as experiencing more sexual harassment and earning less than their White counterparts – who already experience more sexual harassment and earn less than men.

Feminism often focuses on middle-class white heterosexual women but how can we claim to be fighting for equality when we’re leaving all other women on the sidelines or failing to acknowledge how sexism is tied with homophobia and transphobia? We can’t possibly tackle all of these issues in detail this week, but I wanted to make the point that someone fighting for the rights of straight, cisgender, white, middle-class women without paying heed to the multiple oppressions faced by other demographic groups is not, in my opinion, a true feminist and may well be hindering their own cause.

You might ask why, if the word “feminism” has been given negative connotations and it’s all about achieving an equality that recognises men and women as equal, we don’t switch to a more neutral term like “gender equality.” That’s a very intelligent question, and I will put my hands up and admit that I used to make the same argument before I truly understood feminism. The answer is twofold.

Firstly, we are fighting both the idea that we don’t have a problem with sexism any more and the idea that feminists are all strident man-haters who need to go away. If we agree to change the name we give that movement, then we’re letting sexism win. We’re giving in. We’re essentially throwing away all the progress we’ve made so far and failing to see the bigger picture, the fight so far, the huge achievements of feminists in history. It isn’t a new struggle. It’s the same one. And if we don’t recognise that, then we’re forcing ourselves to start from scratch. It’s also beneficial to men. If women weren’t seen as inferior, then maybe men wouldn’t (for example) feel emasculated by being victims of sexual assault and therefore not report it because they are too embarrassed by how “weak” this womanly experience makes them look, or rightly concerned that the police will laugh at them and tell them to man up.

Secondly, while our fight is indeed for gender equality, giving it a neutral name would mean completely failing to recognise the fact that, while men do experience their own struggles as a result of their masculinity, it’s still women who bear the brunt of sexism. It’s women who are still paid less for working just as hard – harder if you bear in mind that it’s still women who do by far the majority of domestic childcare and housework tasks. It’s women who are continually told that their worth as people depends on what they look like, what they wear, how young they appear and what shape their bodies are, whether they choose to settle down with men and have children or not, and so on. It’s women who have to (consciously or otherwise) factor the risk of rape and sexual assault into every one-on-one interaction, social event, working day and journey they make. And so on. If we say we want equal treatment for all genders and give it a neutral name, then we are refusing to recognise that one gender is currently way more privileged by our society than any other. We need to push for women and non-binary people to be treated as equal citizens, to balance those scales, and this must take priority until we’re in a position to iron out the creases rather than making huge radical changes. If we didn’t prioritise women’s rights, then we’d be in exactly the same position we’re in now because even if equal progress was made with men’s and women’s issues, the disparity would remain.

This widespread, historical system of privilege and oppression is the exact reason why you can’t really have “sexism against men.” Sexism refers to a systemic oppression and its myriad manifestations. You can behave in a way that discriminates against men; you can abuse a man; you can be prejudiced against men and you can ruin an individual man’s life (please let’s not try this at home…), but you can’t systemically oppress men, not with the way we have things set up.

Please note that I am absolutely not saying that we should ignore issues that give men specific disadvantages until all women’s issues are sorted out. Women might never achieve true equality (and certainly won’t in our lifetimes), but that’s no reason to hurt or ignore men. For example, more work needs to be done to address how society treats survivors of rape, sexual assault and domestic abuse (e.g. without all the victim-blaming that sadly happens). At the same time, we absolutely need to recognise that many of these survivors are men and often face a different set of problems. Sex crimes and abusive relationships are things that are often seen to affect only women and children; male survivors are often ignored, given less airspace or simply dismissed as somehow not being real victims or survivors. Sometimes men are just told to “man up and take it” or are disbelieved or ridiculed for not being able to defend themselves. That’s a terrible form of victim-blaming that not only fails to acknowledge people’s experiences but also deters them from seeking help when they are not safe. There are shelters for women who are being abused by their partners, but where do men go when they are being abused and feel unsafe at home? This is not something we can just ignore until we’ve somehow fixed the problem of violence against women. We need to treat everyone equally, give everyone the same rights. THAT is what feminism is.

Can we change the sexist culture of English football?

In this country, watching football matches is and always has been seen predominantly as a masculine pastime. As a woman who has attended matches very regularly for almost 20 years, I have found that this tradition very often manifests itself in both overt and more subtle deeply ingrained misogyny. Often, this gets shrugged off, even by me (I’m so used to it) but the problem remains. Why should I and other women have to put up with being treated as inferiors? Why shouldn’t we be allowed to pursue a hobby or lifestyle we love and which means the world to us without the constant risk of being threatened, abused, belittled and pushed out as if we don’t belong?

My football club, I must add, is no more sexist in its setup than any of the other 180-odd clubs I’ve visited. In fact, my club has taken steps towards inclusivity that most others have not even considered and if anything, it’s better than most. But when I examine the treatment I’ve received over the years, I think this only goes to show how deeply the problem runs. And this problem isn’t just sexism. Racism, homophobia and ableism are just as problematic, but I am going to create a separate post to discuss ways in which we can consider how to make organisations we are involved with more accessible to everyone. This time, I will focus on sexism and football because that is a specific problem I want to tackle. Note that I’m also talking about non-league football, in our case five levels below the Premier League. I have noticed that the higher up the leagues you go, the more female spectators you see. It’s probably no coincidence that those clubs have highly-paid PR people and are run as modern businesses that must be seen to embrace diversity. Let’s bear that in mind.

When I discuss the issue with other (male) supporters, I tend to receive one or more of the following responses:

“Stop trying to invent a problem where no problem exists. You are being oversensitive.”

“Football has been a man’s world for 150 years. That’s just the way it is and always has been. We can’t change it.”

“If you give women an advantage [e.g. free entry for one day, an initiative meant to encourage more women to attend] then that’s sexist. It’s sexist against men. That’s hypocritical and defeats your purpose.”

“Football is a man thing. Maybe we want to keep it that way.”

Sadly, I often find that they don’t even consider that any problem exists at all unless I point out the ways in which sexism in football affects them in ways they care about. Women don’t want to come to football because of the constant “this isn’t for you, it’s for men” messages they receive from society. Fans want bigger crowds (and thus more support and money for the club) and agree it’s a good idea to tap into the 50% of the population that generally don’t bother. For my views to get any attention at all, I have to point out that if they want to swell crowds in this way, they have to consider how to make the end product attractive to their target market. Even then, they will argue actively with my accounts of things I have actually experienced, implying that they know better than I do what it’s like to be a woman at football and why women often aren’t interested. Or they say that this is just the way things are.

I’m going to look at those arguments along with what is actually happening from my perspective as a female football fan.

First, the assertion that there isn’t a problem in the first place. I’m going to give a few examples to refute this, but I can understand where it might be coming from. If you are a man who attends football matches, a lot of this will be stuff you have seen happen but thought little of it and a lot will be things you have never thought about, not because you are sexist or thoughtless but because you have never had to.

I also wonder why some people are so defensive if there isn’t actually a problem. If that’s the case, why not just ignore those of us who are trying to raise awareness and have a chuckle at us for wasting our time? More likely, they may sense a threat to the status quo of a culture that not only favours them but actively pushes out people who they perceive as being different from themselves.

Let’s look at an example. My club (which I maintain is no more sexist than any other) holds periodic “Gentlemen’s Evenings,” at which a relatively well-known person, usually a former sportsman (always a man, note) is invited to speak. These events are basically framed as intellectual evenings where an experienced person speaks and the audience listens thoughtfully and asks intelligent questions. That sounds like the sort of evening I’d enjoy, but unfortunately I am not invited because I happen to be a woman. Once, the speaker was someone who my friend had liked and admired for a long time (and she had had some friendly chats with him in the past in sporting settings, which she’d enjoyed). So naturally, she was interested in coming to see him and hearing him speak. She spoke to someone at the club about getting tickets and was told unequivocally that women were not allowed to attend.

The problem is that this is a club trying to reach out to female supporters. Like most football clubs, the majority of attendees are male anyway! So it does seem a little illogical to shut women out completely for some events, whilst wondering why we don’t attend others. Creating an event that privileges and includes men only, when the environment already favours and is dominated by men, is totally unnecessary. It would be like having strictly women-only sessions at a knitting club, which would probably be female-dominated to begin with, and then moaning that men don’t show an interest in yarn crafts. The main reason why fewer women than men attend football matches in the first place is because we are socialised and brought up to believe that football is a man thing (and so girls often don’t grow up with any interest in it). People have said that to my face, including at football matches. And this is reinforcing that idea.

This is exactly why it’s just not correct to state that trying to even things out a bit, perhaps by giving the disadvantaged side a bit of a leg up, is “sexist against men.” NOT making any changes to a system that already favours men and disadvantages women is clearly perpetuating sexism against women. You simply can’t systemically discriminate against a group that sets the traditions, makes the rules, owns and runs the entire organisation and constitutes 95% of its service users. A one-off offer that favours the minority group whilst nothing changes in the background is hardly going to tip those scales to equality, let alone beyond. Maybe people are so used to having an advantage their way that the rare sight of one for the other side shocks them out of being able to see the wood for the trees.

Perhaps as an attempt to balance things out, the club has also arranged Ladies’ Nights. In the spirit of equality, you’d expect these to contain an equal amount of sports-related stuff (because we’re trying to get women into football, right?) and intellectual discussion. Nope. The entertainment consists of a drag artist/cabaret and disco. So we are assuming that men’s entertainment should consist of intelligent conversation and education about life from a sportsman’s perspective, and women’s should be vacuous, sensationalised and entirely unnecessary to use our brains for. That is frankly insulting, although I am sure many women (and indeed men) would really enjoy the event itself. It’s just that, fun though it might be, many of us prefer something a bit more intellectually stimulating, or at least the opportunity to choose the same level of entertainment that men are entitled to at the club. And as football fans, why assume that women’s preferred entertainment is entirely unrelated to football or sport in general? If we must segregate men and women for some social events (and let’s note here that not everyone identifies as one or the other, so some people are de facto excluded from both events), we could at least have a sportswoman sharing her experience in the same way, hopefully inspiring a stronger interest in football/sport from her audience if that is what we need.

Looking at things like this, it becomes laughable to state that there is nothing we can do about the problem. And sometimes my club gets things exactly right. They held a Women’s Day not so long ago, where then-England captain Faye White attended and participated in events held as part of the day. A very large number of women and girls attended and some continued coming for a while, but proportions of male to female supporters appear to be tending back towards their previous ratios. Why aren’t women continuing to keep up an interest? Perhaps it’s because we haven’t been doing anything to make the environment more accessible to women on an ongoing basis. We can’t invite female celebrities every week, but perhaps there are other things we need to look at in addition to one-off things like free entry to matches within the same old male-dominated environment (not a bad idea in itself but unlikely to make a long-term impact without a lot of thought and application elsewhere).

For example, in order to be inclusive of women and encourage them to participate, we also need to send the right message to men. If we only ever have male sportsmen speaking at events to which women aren’t invited, we are telling men over and over that Sport Is For Men and that we only need to involve women as part of an occasional one-off event. So what? So, this contributes to a culture where men are continually telling women, often without realising it, that football is where they don’t belong and this makes women feel unwelcome. We are using only male sporting role models at these events to speak to men about a man’s perspective of sport. “Sport is a man thing, and I’m a man here to tell you men all about what it’s like.” I don’t mean individual men, many of whom are very supportive. Culture affects us all in ways we don’t notice, and if the same messages are continually applied and reinforced, they become invisible because they are so normal.

I remember when I first developed an interest in watching my local side. I was in my early teens at the time and my mother strongly resisted the idea of me attending matches, especially without a chaperone. When I asked why, she told me I was not to be left alone with “all those men,” going on to imply that I was in danger of sexual assault at the hands of these terribly barbaric football fans, who don’t have any bodily autonomy or self-control and would clearly gang-rape me the moment they caught sight of me. I couldn’t fathom why she thought I would be less safe in a thinly spread crowd of 500 potential witnesses than I would be taking a solitary evening walk in our quiet neighbourhood (where I was subjected to almost daily catcalls and harassment no matter what I was doing), but this just goes to show that it isn’t just football fans who think that football is men’s territory. In fact, although I have been a victim of sexual harassment at football matches, my fellow fans were far more likely to be annoyingly overprotective of me when I was that age. Having said that, sexual harassment at football matches is alarmingly rife and almost universally tolerated.

Several years ago, I was approached by the person who was then in charge of commercial development and asked to take on a role of looking after match day sponsors and their guests. I was told that the reason they approached me specifically was because I seemed bubbly and friendly and was often seen chatting with away fans and making friends. Fine. The problem started when this person added that “it has to be a young lady.” When I asked why a woman and why not an older woman, I was told that the “hostess” role was to make the sponsors feel welcome and make them want to come back. And although these particular words were not uttered, it was quite plain in the subtext that my main role was to be eye-candy. I was even told to wear a “nice short skirt and high heels” for the job. I can’t imagine a man being asked to wear shorts for it, can you? This is not acceptable: women are people, not ornaments. But sadly this sort of thing is normal in football. Despite my misgivings (and I was very uncomfortable with a lot of this) I eventually agreed because I was told they couldn’t find anyone else to do it and I really wanted to help my club. I would certainly have refused if asked today, unless I could negotiate a few changes in attitude first! By not challenging this, I was myself contributing to the sexist culture I wanted to be free of.

Most of the time the role was OK, although I hated the constant leers, reactions of patronising surprise when it turned out I knew anything at all about football and the club I’d been part of since the mid-1990s, and being called “love” or “darling.” But because of my role and their contribution to the club, I could hardly tell these people outright that I was not there for their visual entertainment, that women were allowed to watch football too and that since I had introduced myself, they knew full well that my name wasn’t darling. Sometimes, it was worse. They’d put their hands on my back or shoulder (a very typical gesture of dominance) and say suggestive things to each other over my head about the “lovely young lady”, ask for my phone number and touch my bum in clearly non-accidental and VERY invasive ways. I told club officials I was being sexually harassed and was not comfortable with it (who would be?) but the firm message I received in response was “they don’t mean anything by it: boys will be boys, that’s just the generation they were brought up in” etcetera. Basically, I was told that me being harassed in ways that made me feel uncomfortable, violated and unsafe didn’t matter because the perpetrators didn’t INTEND it in that way. That is straight-out wrong, and just because people have learned that this behaviour is acceptable does not mean it’s OK if they aren’t willing to change it. Men do not have to tolerate being treated as objects who are there for other people’s entertainment and whose personal space and bodily autonomy aren’t important. I stuck it out for two seasons and decided enough was enough. Until we can maintain a safe environment for a woman to work in, the role is better filled by a man. That means women are either excluded from the job, or harassed for doing it. Neither is acceptable. The answer should not be to exclude women, it should be to stop men from harassing them.

Another incident that sticks in my head is a time where, at an away ground, I got into a debate about football with one of the home fans with whom I’d been acquainted for a while. As is often the case in sporting debates, we had a distinct difference of opinion. This was all just friendly banter, until he decided he’d had enough. He was waiting as I left the ground and he pinned me against a wall (there was nobody else in sight) and threatened to rape me. It may or may not have been the same day, but it was definitely at the same ground, where one of my fellow supporters insisted and insisted on buying me a drink until I eventually let him, then as soon as I had received it started touching me in the knicker region. When I moved away and told him to stop, he protested, “But I bought you a drink!” That’s just one instance of this “if I buy you a drink then I buy your body with it” thing happening at football matches but it has happened to me a lot.

And there are the catcalls and chants from the terraces that used to happen almost every time I walked past opposing fans when I was young, and occasionally still today. “Get your tits out for the lads!” “Does she take it up the arse?” Wolf-whistles. Last year, a group of kids who couldn’t have been older than fifteen – I’m old enough to be their mother – yelled at me to get my tits out. A lot of women would say “you shouldn’t let that bother you.” In fact, it doesn’t bother me as such, and never really did, but what does bother me is this constant reinforcement of the idea that football matches aren’t a place where women are welcome and the way even children are being taught this. You’re not “one of us” if you’re a woman, except to your own circle of football mates. And there is a line, as the previous paragraph demonstrates, where teasing becomes something that actually threatens our safety. THAT bothers me. If I were more timid and easily embarrassed, those chants would have made me want to hide and never come back. As it is, I really hate being the centre of attention and don’t appreciate being forced into it just because I’m female and happen to be doing something I love.

Even eating at a football ground seems to attract unwanted attention and my female football-attending friends agree that they’ve had the same experience. Nobody bats an eyelid when men buy and eat burgers and chips and pies and hot dogs, unless they do it a lot and happen to be fat (that’s an issue I want to look at another time). But as women, we’re not allowed to eat without a running commentary of “shouldn’t you be watching your figure?” and “dear dear, that doesn’t look very healthy” (as if it’s our fault there are no healthy alternatives available) and “are you really going to eat all of that?” Once, I was called a pig just for ordering the same burger and chip meal the person addressing me had had earlier. Another time, I had just bought a cheeseburger and was taking it back to the terrace when a chap leered at me and went, “Eating again, Sarah?” I’m not even sure what “again” was supposed to mean. Due to financial and time constraints, I actually hadn’t eaten a bite for three days. Perhaps he thought only men were allowed to have meals three times a day.

There’s an argument that football has traditionally been a haven where men can be men without fear of being judged by women, so trying to change that is unfair on men. Don’t get me wrong: I don’t think that men aren’t entitled to safe spaces if they need them, just as women are. But if safe spaces are maintained at the expense of other people, then there is a problem. What I mean is that if you argue that football matches should remain an environment where women are second-class because men need a space where they can let it all hang out, then what you’re effectively saying is that women don’t have a right to the same hobbies or lifestyle that men do. Nobody says you can’t have a men’s association, society or club, but football is something that a lot of women are interested in too so it really isn’t fair to exclude us. If women’s football received the same level of funding, publicity and cultural interest as men’s football, maybe we wouldn’t need to have this discussion.

If we want women to feel welcome then we need to change from the inside out. We can’t start on the outside because we can’t control people’s thoughts or behaviours that result from a constant barrage of misogynistic messages and we can’t tell fans how to speak to each other, for example. This refers to the little messages constantly telling me and my female peers that football isn’t for women, messages that are so commonplace that I sometimes don’t even notice them until I realise I’m feeling vaguely uncomfortable and stop to think about why. Mutual acquaintances ask my male friends for the lowdown on matches I went to and the male friend didn’t while I’m standing right there, then ignore me when I try to answer their questions. People come up to me and whichever male friends I’m with to give or ask for a perspective on something football related, but don’t make eye contact with me and address all conversation to the men. Often I feel like I’m rendered invisible when it comes to football talk.

Then there’s all the “Why do you REALLY go to football?” “Yeah but your dad must have taken you at first, right?” “I don’t believe you’re a proper football fan. Go on, explain the offside rule to me!” “I bet the players love you – are you the mascot?” (I am 33 years old, not 7). “Come on then: which players do you fancy? It’s those legs you’re really here for, admit it.” “Where’s your husband? Why isn’t he here?” And a thousand others. Every week. Incidentally, my husband has only been to about three of our games in the 5 years I’ve known him, yet I was asked this question three times in the first three months of the season after we got married. I have never once heard a male fan asked why his female partner is absent by someone who doesn’t know her, unless she is a regular attender herself. Not “does she like football too” or “does she ever come with you” but “where is your wife/girlfriend: why isn’t she here?” I found in the past that I didn’t even have to have a male partner: people would still ask me where “he” was.

And then we wonder why football isn’t more popular with women, and it’s the men who come up with schemes to entice them in. Not that they shouldn’t, but I know I haven’t been proactively asked for my opinions as part of this minority group and nor have other women I know. There are no women on the board of directors at most clubs, and very few women involved in development roles. Initiatives developed by our club have mostly been very positive, but are developed from a male perspective and no work has been done to address the culture behind the reasons why women are not only growing up to dislike or be uninterested in football (not that everyone should be; it’s not everyone’s cup of tea, but it isn’t an innately male thing and there is not a football-liking gene on the Y chromosome) but are not attending regularly even if they do like it. Getting them through the gate is one thing, but will they feel valued enough to come back? I find it really sad that so many of my fellow fans who want exactly the same things I want (better crowds and more support) refuse to listen to my suggestions and favour those that don’t address the underlying problems. Our recent initiative of giving women free entry for one day made absolutely no noticeable difference in the number of women in the crowd. How does it make sense to believe you are reaching out to a demographic group while at the same time totally refusing to listen to what people from that group are saying they want and need?

This is not men versus women and I am not saying all men do this or all men are that. I’m critiquing a culture, not individuals or men as a whole. If you are a man, it isn’t your fault that you’ve been brought up to make implicit judgements about the role/value of women and their opinions, but it is up to you if you want to unlearn those learnings. People call me oversensitive or picky but if I couldn’t take this sort of thing I would not have carried on coming to almost every first team game in nearly 20 years and put up with being on the wrong end of sexism to whatever degree at every single one of them.

We can’t change a culture overnight, but we can start small and if we start small then we can work our way up and as part of that process perhaps more women will feel welcome and enabled to join us. Most women I know who support my club started coming because their families, partners or friends brought them along many years ago and they started coming regularly with them because until relatively recently women just didn’t start going to football of their own volition. Those people might have a different perspective on this; I’m one of the few exceptions to the above rule. But we need to reach out to all women if that is indeed our goal.

Pregnant People are Still People

Most people, when they have learned about my pregnancy, have been absolutely lovely about it. Nearly all of my friends, colleagues and acquaintances have been nothing but supportive and I am so grateful to have these wonderful people in my life.

But sadly, whenever anyone asks me if I’ve had any problems or struggles along the way, the honest answer is that the biggest problem, the biggest discomfort, the biggest inconvenience has been other people and the way their attitude towards me has changed.

Many people tend to focus less on me as a person, how I am and what I’m up to, than they do on my pregnancy and my plans around that. Sometimes I have found myself feeling as if certain people see me as nothing more than a pregnancy on legs. This gives me a mental image of a classic Humpty Dumpty illustration with myself as a gigantic egg (complete with face and legs).

I found that pregnancy being seen as public property even extended to the time before I told people I was pregnant. People’s expectations of women, all the “when are you having children” questions and so on is a whole other article in itself, but when you are trying to conceive it becomes painful and frustrating as well as annoying and invasive. I gave up alcohol during that time and immediately found that I couldn’t order a non-alcoholic drink at a bar I have been a regular at for years without the staff raising their eyebrows, asking why and making comments like, “ooh, not drinking eh?” in suggestive tones. Friends and acquaintances asked straight out, “you’re not pregnant are you?” I found this very taxing during the first few weeks and months of pregnancy when I wasn’t yet ready to tell people the news. I don’t really do social lying, so it felt very awkward to have to deflect this with responses such as, “there is more than one possible reason why someone might want to drink grapefruit juice, and some of those reasons are personal!” You don’t get people asking “you don’t have cancer do you?” if someone decides to give up smoking and has a dreadful cough. It’s hard not to sound defensive.

One particularly obnoxious person, a friend of a friend whom I’d never met before, told me straight out that she didn’t care whether someone was ready to tell or not: if they were pregnant, she wanted to know. This is a great example of people’s (generally women’s) reproductive capacity and pregnancy being seen as public property rather than the private and personal issue it is unless we decide to share it. This person only cared about the pregnancy of a woman she didn’t even know, and not at all about that woman herself: her wishes, privacy or anxieties. She didn’t care if someone was reluctant to share the news because they were in a high-risk group for miscarriage and couldn’t face the potential trauma of having to tell people over and over again that they’d lost the baby because the news had spread and people were asking about it. An estimated 1 in 4 pregnancies end in miscarriages, nearly all of which occur during the first 12-14 weeks. That’s why, in case you didn’t know, most people don’t share the news until after their first scan around that time where they can see if all is well. And this person didn’t care that someone’s pregnancy, which might well be one of the most exciting things that’s happened to them, was their news to tell and not hers to triumphantly guess.

Imagine if you had been building yourself up for weeks to make a big announcement about something you’d dreamed for years would happen, you’d happily rehearsed in your head how you would say it, and then just as you had got everyone sitting up and listening, someone blurted out “Don’t tell me” and made your announcement for you. Now imagine the same event, but that you never wanted this thing to happen or for people to know about it. The event is unwanted and you are going through a great deal of pain, fear and guilt about the situation you have been forced into. You might even feel ashamed of being in that situation, even though it isn’t your fault and you haven’t done anything wrong. Now imagine people coming up and guessing that you are in that situation, telling others and asking you invasive questions about it. Why should pregnancy be any different from other such situations; why should it trump our bodily autonomy and consent?

So, would you like to know how not to annoy someone who’s pregnant?* Good. Then have a think about whether any of the following would annoy you, and if so, please don’t do them.

*NB I don’t say “pregnant women” as a generalisation, because some people who can become pregnant don’t identify as women. If you think that’s “political correctness gone mad!!!” frankly I don’t care – I don’t want to exclude people just because they’re in a small minority, and it won’t hurt you if I use impersonal pronouns in my own work. (Pregnancy issues for trans/genderqueer people is a whole other article!)

People talk to you as if you are dying of some terrible illness

I noticed a few months in that people had stopped asking me how I am. Instead of “how are you” when we meet, they now say (in a hushed tone, with a concerned hand on my forearm), “How are you feeling?” as if I had been really, really sick.

Let’s get one thing straight: I appreciate the fact that they care about me. That’s the most important thing. It’s very nice to know that people are concerned about my welfare.

But I’m not ill. I haven’t been suffering from appalling morning sickness, or mysterious bleeding, or painful bloating, or any of the other problems a lot of people experience in early and second-trimester pregnancy. If I had, then it would make perfect sense to me when people check in to see how I’m feeling (as long as I didn’t mind sharing that information with them). But I haven’t, and one thing I really hate is being mollycoddled.

Another thing people do – although I have to say it hasn’t really happened to me – is try to police one’s eating habits and activities. “Should you really be eating that?” “Is it OK you doing that? Do you want me to do it for you?” Again, this comes from a place of good intentions and concern, although perhaps more for the foetus’ wellbeing rather than the mother’s (please don’t forget we are still people, too). But it really isn’t anyone else’s place to tell someone what to do with their body. The person you’re talking to is the one who has discussed with their doctor and midwife what they should and shouldn’t do and they have more than likely consulted other people and read up on it too. They also know their own bodies a lot better than you do.

People talk to or about you as if pregnancy is shameful or dirty

Anyone who knows anything about our social history will know where this comes from. In the past, women were shamed, marginalised and even incarcerated for becoming pregnant outside of marriage, because it was considered morally wrong. Despite the fact that someone had to impregnate her and that it would clearly be much easier to do that without her consent than without his, men were never subjected to the same level of judgement and they still aren’t.

Fortunately, we have moved on from that judgemental and oppressive time.

…Right?

Well, sadly, there are still a lot of rather negative relics from that era and pregnancy is one thing that really seems to bring them out. Personally, I strongly dislike the phrases “to fall pregnant” (which implies falling from grace or becoming “lowered”) and even “how far gone are you?” because that comes from a time where you were basically excluded from society if other people didn’t approve of your personal relationship and circumstances when you conceived. It sort of implies that there’s a point of no return, after which you are, well, gone. I personally prefer “get pregnant” which implies gaining something (i.e. a foetus, embryo, whatever stage you’re at) and “how far along are you?” which suggests the idea of pregnancy as a journey and I think that’s quite nice, but it’s really up to the individual. These are such little things, but they build up over time. People almost certainly don’t consider the implications of these sorts of phrases, but they do come from a place of pretty extreme misogyny and they don’t reinforce the positive message that a much wanted and anticipated pregnancy is a really wonderful thing. I wouldn’t want to police the words and phrases people use when they’re generally acceptable to most people, but I still think it’s often a good idea to think about where what we’re saying came from and what it might imply to some people.

You might think all of that is quite petty and insignificant (I mean, all words and phrases have origins and some are bound to be less savoury than others), but one that really grated on me was when someone referred to my pregnancy as my “condition” – that last word said in a stage whisper behind a cupped hand, as if “pregnancy” was a dirty word or being pregnant was some appalling infection resulting from filthy habits.

I completely understand that some people will use that sort of language because of the era in which they grew up. Some people therefore aren’t completely comfortable saying “pregnant” or “pregnancy” because a long time ago it was considered indelicate and they haven’t managed to move on from that time for whatever reason. I respect that: after all, it’s our experiences that make us who we are. But I expect people to respect me in return and not refer to my pregnancy as if it’s something embarrassing to be ashamed of or to hide. You implying that it is also implies that I’ve done something icky or embarrassing that you’re ashamed to associate yourself with and that’s rather insulting. Sex isn’t either of those, if you’re mature enough to talk about it like an adult.

Even if you’re a close friend, family member or even a partner of someone who’s pregnant, please remember this is their body you’re talking about so their opinions and feelings do matter and it isn’t about you. I’d respect your wishes if you were pregnant and preferred me to refer to it as your “condition,” or perhaps we could compromise on something we’re both comfortable with. How about referring to me “expecting a baby,” which has always been seen as rather genteel, and leave my body and medical status out of it altogether?

People touch you without permission (in the general region of your intestines)

People, this is literally the worst thing I have experienced in pregnancy. The. Worst.

I knew beforehand that people did, for some reason, like to feel up pregnant women who have a “bump” (incidentally, I hate that word used to describe a visible pregnancy, but I realise it’s not rational hatred so won’t go on about that). I wasn’t prepared for the sheer number of people who would do it when I didn’t even look pregnant.

People, from those I know reasonably well to complete strangers who’ve overheard me informing a friend that I’m pregnant, have reached out and, before I can move to stop them, started touching, rubbing or patting my stomach. Without so much as a by-your-leave or even a warning.

Please don’t do this. It really is very rude. Especially if you don’t know the person well enough to be sure of their boundaries. I have always hated being touched anyway, except by people I know and trust enough to have established different boundaries with them. Doing it to someone you don’t even know, without their permission, is a pretty strong violation of their right to bodily autonomy and personal space. Come to think of it, so is doing it to a close relative!

The abdominal area is one of the most sensitive and vulnerable parts of the body. If you look up to see a football flying towards you at speed, your immediate instinct will be to bend forward and/or to shoot your hands out in front of you, specifically protecting your face and stomach (and breasts, if you have them). So it isn’t generally expected that you will touch random strangers there and I expect most people wouldn’t take too kindly to it because, like that football, it instinctively feels like a threat. I see absolutely no reason why that should change just because somewhere in that person’s body is a small bundle of cells that might one day grow into a baby. The person carrying the pregnancy is still the same person they were before the pregnancy and I don’t suppose you would have done it then. We don’t suddenly want people to put their paws all over us the moment we conceive – quite the reverse if anything.

When someone’s pregnant, that instinct to protect the vulnerable abdomen actually feels many times stronger, so imagine how much more uncomfortable it is for us to be randomly touched. For me (every pregnancy is different), my skin has also become so sensitive that any touch is quite uncomfortable even if I’m expecting it. And yes, it is important to consider my feelings when you want to invade my personal space and touch my body. It’s not about the baby, who doesn’t even know you’re there (and isn’t even a baby yet). And it certainly isn’t about you.

People often say it’s human nature, some people are just touchy-feely, and so on. I’m not arguing with any of that, but why should it override my feelings and wishes about my own body? I’m not less important or less human than you because I’m pregnant, and I have a very real human instinct to protect myself from unwanted touching. I mean, you could also argue that it’s human nature to hit someone who’s making you angry and some people are just bad-tempered, but we don’t think that makes it acceptable, do we? Again, if you have some weird urge to invade my personal space and cross my boundaries, then your action stops being about you and starts being about me. It’s OK to have that urge – nobody is telling you how to feel – but if you really want to touch someone who’s pregnant (or not!), you need to consider their personal boundaries and how comfortable they are likely to be with you, and more importantly ask their permission first. It’s a simple question: it can’t be that hard to ask.

The first time someone did this, I was 13 weeks pregnant. The foetus was about as long as an iPhone is wide. What was even the point? Even the person who is pregnant can’t feel anything from within at that stage, so what exactly are people expecting to get out of this bizarre interaction? As one pregnant woman said to me, “They don’t rub my partner’s balls and say well done, do they?”

Once, I was so annoyed that I pointed out that the baby wasn’t developing in my intestines. It’s much lower during the stage I was at: just above the pubic bone. To help with this anatomy lesson, I pointed for them – it’s about where the top of your underwear usually is – and also helpfully pointed out where I am expecting the baby to finally emerge from my body. I then asked them if they thought it would be appropriate to touch me there, too. For some reason, this seemed to put them off.

People start planning your life for you

This is a difficult one, because it is about people who are offering help with the very best of intentions. It feels a little ungrateful to complain about that, but it is a bit much at times…

“Ooh, you’ll have a lot of stuff to buy! You’ll have to start thinking about that soon. Let’s make a list…….” “Have you booked your antenatal classes yet? You need to do that.” “I love baby clothes shopping – let’s make a date and we can go together.”

Calm down, folks. These are my plans to make, not yours.

I know it’s exciting. And, once again, I know it’s one of those things that come from people’s kindness and wanting to help out and make sure I’ve got everything I need. But I’m afraid it actually feels really invasive and sometimes a bit interfering, partly because I can guarantee you are not the only one doing it and there are only so many shopping trips and lists we can make on other people’s whims. It’s even more exciting for me than it is for you, so please, please don’t take that away from me.

If you want to offer your help, that’s really nice of you. But it would be even nicer if you did that by asking the person if they want help with anything and what you can do, rather than assuming they haven’t already made plans and don’t know what they’re doing. When everyone is telling you what to do and when to do it, it gets really overwhelming and, although it’s well-intentioned, pretty damn annoying. Your intention is one thing but the end result can be quite another.

Some people have been wasting their time telling me I need to do this and that and book such-and-such an appointment. I then have to gently point out that it’s the midwife’s job to sort these things out with me, and yes she has done it. I don’t need an amateur midwife as well as a qualified one.

But thanks for your offers of help. That’s a genuine thank you. The thing is, if you know me well enough to involve yourself in my plans, then you will know that I am the sort of person who has something of a flair for planning big events and projects and that I really hate other people taking that away from me. That’s very specific to me but I think this is a pretty good rule of thumb: if you don’t know someone well enough that you’d offer specific help to plan their wedding or birthday party, don’t do it with their baby. You can always ask, rather than assume.

People talk to you as if you had never heard of having a child and have no idea what it entails

Again, trying to help is a very honourable and well-intentioned thing to do. But so is thinking about whom you are doing this for: yourself or the person you propose helping? Do consider whether you actually are helping or whether your actions might in fact be rather invasive.

I think this one is actually a lot worse for expectant fathers, but I’ve had my fair share of it too. For some reason, people seem to think that somehow I’ve managed to reach 32 years of age without having heard or read anything about having children.

Yes, I know childbirth hurts and you will never feel anything else like it.

Yes, I know not everyone is able to breastfeed and things don’t always turn out as you expect or want them to.

Yes, I know you stop having a proper sleep pattern.

Yes, I know bringing up children is full of difficult choices and your ideals about yourself as a parent and about your child aren’t going to be a perfect match for real life.

Yes, I know it “changes your life” and “nothing can prepare you for being so absolutely overcome with emotion.” Just because I haven’t felt it doesn’t mean I don’t understand or have somehow got to where I am without having any awareness of it. Also, it would be nice if you let me discover that latter one for myself.

And so on.

It’s one thing sharing your personal stories and experiences, which are always welcome and useful (remember every pregnancy is different, though). It’s another thing to speak to me as if I can’t possibly have picked up information from the many people I know who are parents, the vast amount of reading I’ve done and general observation, films and TV, books, Google, whatever. In my case, I’m a literate and well-educated woman in my 30s with a healthy dose of intellectual curiosity and who has been planning to have children for a very long time. I’m not a naïve teenager who was brought up in an isolation chamber and has never switched on the TV.

Some people seem to think that because they’re parents and I’m not, I can’t possibly know anything they know, even though they’ve talked about NOTHING BUT their children since the day they first found out they were pregnant. You’d think they’d realise one might have picked up something along the way.

They’ll still actually know more about parenting than people without children, of course. But we might not want a lecture and there is such a thing as too much information. One needs to start with the basics and then figure the rest out for oneself. We’ll know when we want help or advice.

You are quite right if you tell me that no amount of knowledge can equal the actual experience of having a child (again, as if I didn’t already understand that) but you are wrong if you think that telling me about yours makes any difference. Every pregnancy and every child is different and there are always going to be unexpected complications along the way that are different for each one. You can’t pass your experience on to me, only your knowledge. And chances are I’ve heard it before.

Personally, if I want to know something about having kids and I don’t think Google is the best way then I will ask someone who has kids, especially if they’ve experienced the same complications. That doesn’t mean you shouldn’t tell someone who’s pregnant about stuff or offer them useful hints and tips. Just don’t assume they know nothing about it at all. Put another way, it’s not what you tell people, it’s how you tell them. And if you’re doing it, you’re probably doing it right but some people aren’t and it is annoying.

My mother tells me her own mother was an absolute nightmare for this until she pointed out “I’ve had more children than you have now: I know what I’m doing!” Well said, but I’d go one further: nobody knows more about caring for your own baby than you do.

And please stop treating fathers-to-be as if they don’t even know which end of a baby is which. Like us, they tend to be capable of reading, listening and observing. “Oooh, you know you won’t be able to go to the pub every night, don’t you?” “It’s hard work you know!” “Don’t forget they poo and cry and need feeding! It’s not all fun and games!” Yeah, by the way, these guys are adults. They aren’t stupid. It’s really kind of sexist to assume that only women should know anything about child-rearing.

You feel really tired all the time

Well, at least I can’t blame other people for everything

The Power of Language Part II: Empowerment

Last week we looked at how language can be used, consciously or unconsciously, to oppress people and other them. This time, I want to think about something much more specific. That is, the way language is used in health and social care settings and how it can sometimes contribute to disempowerment of people who use those services.

Is this a form of oppression? Absolutely. People who use services are in a vulnerable position because of their disability, age or health (particularly mental health). These are all groups that experience oppression and are marginalised by a world set up to cater for people who aren’t seen to be like them. And so professionals need to be mindful of the impact of the language they use.

Even if this doesn’t feel relevant to you, it’s likely that it will be one day as you and your loved ones get older. It might also help you think about the language you use towards people you have authority over, whether they are your employees, your children or anyone else who looks up to you. If you hold the power, it is vital to use that power fairly and wisely.

I’m writing specifically about care settings mainly because I’ve spent my whole career working either in or with health and social care services and have found that there are a lot of disturbingly common trends that show that we have failed to move away completely from institutional care. Certain language and ways of referring to people are almost universal and because of this, they are accepted without question. So I want to question some of those things now, as I do in my work. I am exclusively referring to adult services because the dynamic is a little different with children’s services.

If you are healthy and able-bodied and have never had to be cared for long-term by professionals (or worked as one), it will be helpful to start with an example so you know the sort of situation I am referring to.

Imagine something happens to you that changes your life. From now on, you will have to start using a health or social care service full time. This might mean moving into a care home, or having carers or nurses come to visit you at home at set times throughout the day. It might mean moving into a hospital ward. Whichever it is, the impact on your life is huge, sudden and frightening. You might not be able to understand what is happening, depending on the reasons for your changed needs.

Instead of being able to do everything for yourself (and, perhaps, your children and pets), you suddenly have staff around who help you. They do some things for you, like preparing your meals, and they do some things to you, like washing you.

How might this make you feel? Take a moment to reflect.

I found that I might feel powerless, infantilised and dehumanised. I might be grieving over the loss of my independence, something that I place a very high value on. I might be thinking that I had lost not only a whole way of life, but also a part of who I was.

I thought that I would most definitely have this conversation with myself again if ever someone I cared about were placed into this sort of situation. And then I would have it with that person, if I could.

Now imagine that instead of doing things for you and to you, staff are doing things with you, like working with you to prepare a meal of your choice, and helping you do things for yourself, like teaching you how to use equipment so you can get in and out of the shower.

Does this make any difference to how you feel? Again, let’s reflect. I thought that I might feel supported and reassured in a really frightening situation. I might still be grieving over the loss of my independence, but would gain solace from the fact that I was still allowed some degree of autonomy.

The end results the staff are working towards with you in each of those two scenarios are exactly the same: you get a cooked meal and a shower. But the way staff approach and talk about those tasks says a lot about the culture of a service. It might make people who use the service feel very differently about their care, their lives and their ability to make choices and have control over both of these. It might mean that the staff are carrying out those same tasks in different ways that give people different levels of choice and autonomy over how the tasks are done.

If in future you have to help someone choose a care service or do so for yourself, it’s a good idea to visit a few times and listen to how staff refer to people. (Note that I am absolutely not criticising care staff, but rather the cultural context in which they have been trained to do their jobs. Some individual staff are brilliant at empowering people.)

Let’s have a look at some of the ways in which language can contribute to a culture that disempowers people.

  1. The way we talk about people might focus on problems, disabilities or things people can’t do. I have seen a care plan (a comprehensive account of what support a person requires a service to provide) that is written like this: “Problem 1: [Name] can’t walk independently… Problem 2: [Name] has epilepsy.”

By seeing a person as a set of problems to be solved, we are taking away their personhood and turning them into a task to be performed. By giving them constant messages that say “you can’t do A, you can’t do B” we are telling people they are weak and helpless. We reinforce this by constantly showing them they can’t do things (perhaps by doing them ourselves without asking), and they are likely to start believing that they can’t do anything for themselves.

  1. We often fail to take into account how people communicate or understand the world. I see a lot of written information supposedly created for people who are using services, when those people aren’t able to read. When pictures and symbols are used, they’re not always used thoughtfully and don’t do a good job of communicating the intended message.

By doing this, we are telling people that they don’t matter so much if they’re not able to communicate in the same way as most people. We are effectively taking away their voice.

The number one worst – and alarmingly common – phrase I hear care staff say about people is that he or she “can’t communicate.”

This is nonsense. It is NEVER true. Everyone can communicate actively if they are conscious, but some people do so in more subtle ways than others. If the equipment that Professor Stephen Hawking uses to communicate malfunctioned, would we write him off as being incapable of communication? No, of course not. We know he can communicate extremely effectively. He just needs support from his equipment to do so. Thousands of people aren’t able to speak, write or use sign language, but each one of those people is capable of communication if we bother to give them the support they need to do so. Far too often, we just don’t take the time to do that.

Using the phrase “can’t communicate” to describe someone who does not speak is tremendously disempowering. It is to completely ignore and invalidate all forms of non-verbal communication such as eye contact, facial expressions, gestures, noises and vocalisations, writing or making marks, signing, touch, actions such as moving towards a desired object, and many more. Billions of ways really, because every human being on Earth is different and not one of us communicates solely by using spoken words.

Communication is our interface with the world. So if we invalidate a person’s communication methods because they are different, then we are invalidating the whole person because they are different. Just because someone has a severe learning disability or brain injury or advanced dementia doesn’t mean it isn’t worth making the effort to enable their communication.

(It is not “patronising” to simplify your words or not automatically assume someone will understand you if they don’t communicate in the same way you do. But it is patronising and disempowering to always speak to someone in a falsely bright and cheerful voice as if they were a child and then turn to talk to your colleague about them in your normal tone. That’s just telling people that they are “other” and that you see your colleague as an equal but them as beneath you.)

  1. We talk about people, rather than to them. A member of staff might walk up to another member of staff who’s sitting with someone, and say “Has she had her meds?” meaning the person they are sitting with. When they get their answer, often they walk away without acknowledging the person at all.

Even if the person isn’t able to communicate verbally, there’s a world of difference between this and going up to the person to say “Hello [name]! I was just wondering if you’d taken your medicine yet. Let’s see if [Staff] can tell me.” Even if she doesn’t fully understand what we are saying, she will know that we are acknowledging and including her to some degree.

When we talk over people’s heads about their own lives or the care they are receiving, we are telling them that they don’t have a say in it. If we do this, they probably won’t realise that actually, they do have a choice in how they live their lives rather than having everyone else deciding things for them. And if we do this because the person is deaf or has complex needs and it just takes too long when we are very busy, then (because they are still aware that we need to discuss their care) we are effectively telling them that we’re too busy to meet their needs and therefore their input doesn’t matter enough for us to make the effort.

  1. We make people passive agents in their own lives, talking about doing things to or for them. Social services often talk about “placing” people in care homes, as if they were chess pieces. Phrases we hear a lot in social care are “I’m taking [person] for a walk” or “have they been toileted?”

Who is the walk supposed to benefit? Who is using the toilet? It isn’t the member of staff. It’s the person being cared for. But this isn’t what we are telling them when we use this language. The active person in the above sentences is the member of staff.

You could take a dog for a walk, or a rugby ball, or a potted plant. By using this language about a person, we are reducing their personhood and autonomy to that of a passive object or pet. How do we then expect them to have the confidence to tell us where they want to go on their walk? Why should it be care staff who choose where people take their morning stroll?

On the other hand, you could accompany someone who is taking a walk, or you could support him to go and use the toilet. Then he no longer sounds like a puppet. Remember that unless he is deaf, he hears what you say too.

If someone lives in a care home, we often forget that this is their home. We confuse young adults with learning disabilities by talking about them going “home” to their families at the weekends after they’ve been repeatedly told that “this is your home now,” and we talk about people “helping” with the cooking or household tasks in their own home. This is how we speak to our children and is a really good way of denying adults their independence and making them feel helpless and passive. Supporting someone to manage their household, rather than telling them they are “helping” with something you are doing, is a much better way of giving someone the message that they can be the proud owner of their own lives.

  1. We tell people what’s going to happen, rather than asking them. This is particularly true in residential care, where a small number of staff often have to care for a relatively large number of people (it’s even more true of hospitals, but I’d argue there are more valid reasons there, with some exceptions). So that everything can get done in time, care homes often have rigid routines. Although this is often dictated in part by things neither staff nor residents can control (for example, doctors often prescribe medicines to be taken at certain times of the day), there isn’t usually any particular reason for tea always being served at 5pm or board games being wheeled out at 3pm.

Don’t get me wrong: routines are a really good thing for most people. They give our lives structure when we’ve lost the ability to work, for example. My point is that I have never once come across a care home routine that exists because management have asked the people living there how they would like things done, down to staff shift times and (if applicable) the cook’s working hours. Yes, individuals are (in good services) asked about their personal care routine and what time they like to get up and so on, but they still don’t get much choice around things that affect them as a group of people.

Because staff are often so set in their ways, they sometimes forget that they are doing things to help individuals, not for the home. But there is a world of difference between “Come, it’s tea time now” and “What time do you want your tea today?” One gives someone the message that they don’t have a choice. The other makes it explicit that they do.

Another thing I see a lot is staff asking or telling people to do things but not explaining why. For example, “sit down please” to someone who is pacing around a room. This communication failure can be very disempowering because it doesn’t give people an informed choice. “Because I said so” is not a valid reason for an adult to do as you say. There’s no empathy demonstrated. If I heard more “[Person], you seem restless. Would you feel more settled if we sat down for a chat?” then I would be a lot happier.

  1. We give the impression of “knowing everything” about a person rather than letting them tell us about themselves. Staff have to know a lot about people they support in order to provide good care in the context of the individual person’s likes and dislikes, medical history, personal history, hobbies and interests, routine preferences, healthcare needs and so on.

However, if they know this simply by reading the information they are supplied without the person being there, then this reinforces the idea that we are talking about a person over their head. Why should that person then want to open up and get to know us, if they are being told we already know everything about them? We are treating them as a complex task we have to be trained how to do, rather than someone who is capable (if they are) of telling us about themselves.

I have seen staff coming on shift, reading the notes from the previous shift and then their first contact with a person using the service consists of the member of staff saying in a jokey way, “I heard you were a bit naughty and did a lot of shouting this morning!”

Not only is this infantilising the person and trivialising their distress, but it’s taking away their opportunity to tell us their perspective of what happened. People generally don’t just start shouting because they are malicious and fancy stirring things up. It’s usually because they are angry, upset, extremely under or overstimulated or otherwise distressed. If we are giving the message that we know what happened and have been able to draw our own conclusions without consulting them, then why should they feel their input would be valued? And if we don’t take into account their feelings and reasons, then how can we improve things so they don’t have to feel that way?

  1. We fail to use the person’s preferred name, or always use pronouns rather than names. If we are going to refer to someone only as “he” or “you” or “she” then we may as well just give them a number and be done with it.

At a care home, I recently met a woman who had a very beautiful and unusual name. But if you transposed two of the letters in that name, you ended up with a different, more common name. Despite the fact that all of her care documentation had her real name on and her family were often in contact, staff (including the home manager!) persisted on calling her by the more common name when speaking to her, speaking about her or writing records and reminders about her care. So the people living with her (and their visitors) called her by the wrong name, too.

When I asked the manager, he admitted that yes, the more unusual name was the woman’s correct name. But I later heard him speak to her, using the wrong name again.

The woman in question could hear perfectly well, but was not able to speak. Can you imagine how disempowered you might feel if everyone you met called you by a name that wasn’t yours? Would you maybe feel that they were erasing your identity, particularly if you had a unique name that you were proud of? Would you maybe start thinking that nobody was talking to you at all but ignoring you in favour of someone standing behind you? You might even start feeling that everything was happening to someone else and you were not really you any more.

  1. We refer to people’s care in terms of tasks rather than the people themselves. Recently I heard one member of staff saying to another (in a communal area) “Have you done Room 5’s meds?”

Was there not a person in Room 5?

This sort of casual dehumanisation reinforces the message that people’s choices don’t really matter because they are simply there to have things done to them. By referring to people as tasks, we erase their agency and ability to choose. Perhaps in this case, the member of staff was trying to preserve the person’s confidentiality by not broadcasting the fact that they needed medicine. But this was misguided. The people who could overhear weren’t daft. They knew where Room 5 was, and they knew who occupied it.

If we use language in the ways shown above, we are giving people the message that they don’t have a choice in how they live their lives. No matter how experienced and intelligent those people are, they are likely not to realise they do have choices if they are never offered choices.

If we take away people’s right to make choices, then we are effectively imprisoning them. Imprisoning them in their own homes, in unfamiliar buildings, or in places where they are surrounded by other people in exactly the same situation.

Do they deserve this, just because they need a bit more support than the rest of us? Do they deserve treatment that makes them feel objectified, dehumanised or as if they are a burden?

The upshot of this is that people may lose motivation to do things for themselves, or might lose the skills they have built up over their lives, because they are led to believe they can’t do things for themselves.

They may feel less able to speak up about abuse or discrimination, or come to believe that they deserve this treatment. Because, horrific though it may be to contemplate it, some care staff do abuse the power that their job gives them. They are a tiny minority among a hard-working and caring majority, but they do slip through the net from time to time. And what’s frightening is that they usually believe they are doing the right thing.

Perhaps if we didn’t use language that constantly reinforced the power of care staff over people using services, then this would not happen so much. If we gave more of that power to the right people – those whose lives we are effectively controlling – then perhaps staff wouldn’t have so much power that they could potentially abuse in the first place.

If people feel that they or their opinions don’t matter, they won’t want to communicate their thought and feelings. If they don’t do that, then how can we care for them as individuals? If we tell them they are just another task, then that is how they will behave: passively.

In other words, if we continue to use disempowering language, then people’s quality of life will suffer. Ultimately, they lose their dignity and independence or are infantilised because they aren’t being given the opportunity to be treated and to behave as adults. People might feel miserable and lonely, but not really know why.

Is this how we want to treat our loved ones when they need to be cared for?

Or could we perhaps make a bit more of an effort? Can we not describe a person’s individual communication methods instead of reducing them to the status of a passive object that can’t communicate (and therefore implying that because they apparently can’t make choices, express preferences or tell us what they want then there is no point in trying to listen to them)? Can we not let people know they can have the support they want and need to do as much for themselves as they can, rather than just doing things to them? Can we not use people’s names – the names they want to be called – and acknowledge who they are rather than referring to them as pieces of work? Can we not refer to people’s own lives as their own, rather than as if they are just there to help us get our jobs done? Can we not ask people what they think and about themselves, rather than telling them we know everything about them already?

Of course we can!

The Power of Language Part I: Equality

Before we start, I want to acknowledge that not all human beings are able to use language in the same ways. Some don’t use verbal language at all; others have trouble understanding metaphor and so on. This post refers to people who are able to converse fluently because therein lie the issues I want to address. I refer to the English language throughout, because it is the only language in which I am culturally fluent. By culturally fluent, I mean not only functionally fluent but also aware of the subtle nuances of implication that link language and culture. For example, most people masturbate from time to time but if I called you a wanker that would be very rude of me because it means more than its literal meaning of someone who masturbates.

Language is something we come equipped with an innate ability to start learning from the day we are born. It comes so naturally to us that we often don’t realise how immensely powerful the ways in which we use it can be. We don’t really think about the words and phrases we use in day-to-day conversations. We have stock phrases and expressions and association words that we use a lot. We need to, because otherwise conversations would move at snail’s pace as our brains worked hard to find the right words among the thousands that we know.

So when we tell people that using a particular word or phrase actually contributes to oppression of a certain group of people, it’s easy to see why they often resist the idea. It’s really difficult to self-censor when it comes to words and phrases we’ve used since childhood without anyone questioning it. People will often ask “why should I?” or “what difference does a word make?”

The answer to the latter question is, sometimes, “a hell of a lot.” No, really. Language is so much more powerful than we give it credit for being. The English language is so complex, so diverse and so multi-faceted that we might have hundreds or even thousands of ways in which to communicate the same broad concept. This, of course, includes non-verbal language.

One thing that really frustrates me is that some people (and, in fairness, I only know one person who consistently does this) resent the fact that “I’m not allowed to say the word gay in its proper sense any more because of THEM taking that word.” The first problem is that the “proper sense” of that word has, as with hundreds of other words in our language, changed over the years. If everyone behaved as stubbornly as this person, we would not be speaking English at all. We have plenty of synonyms for gaiety in modern English. And actually, “gay” was used to mean promiscuous (a “gay man” was a man who slept with a lot of prostitutes) in the 19th century, so if anyone has “taken” the word, it was straight men first!

The more important problem concerns the reason why gay people had to use the word in the first place. Consider belonging to a group (simply by virtue of how you were born) that was abused, ostracised and oppressed so badly by mainstream society that you had to resort to using euphemisms to describe who you were because if you told it like it was you risked being beaten up, raped or forced to have psychiatric “correction” treatment. Then think about being a member of the group doing that oppressing, being someone who never has to fear being harmed for who you are and whom you love. But in return for that privilege, you are no longer able to use one word (that has plenty of synonyms and means nothing special to you) in its archaic sense for fear of being misunderstood. Boo hoo, poor you.

Gay people don’t oppress themselves and didn’t “steal” that word just to annoy everyone else. If people didn’t use “homo” as an insult or label their sexuality as a medical disorder, they might not have had to. Similarly, “it was all right to say [racial slur] when I was young!” is not a valid reason to carry on using it. Society is moving forward in terms of equality, and that needs to include us all. Words used to describe oppressed groups have to change frequently, because oppressors soon turn those words into slurs.

The problem with language and equality is that there are so many words and phrases embedded deeply into our language and culture that contribute to oppression.

“Stop being such a girl” – as spoken to a man who is betraying some sort of weakness.

“Ugh! You look like a homeless person.”

“Another doughnut? You are being such a fatty.”

“Modern footballers flounce around like poofs.”

“She’s a complete retard.”

“You’re behaving like a crazy person.”

We use these words and phrases in natural and glib ways, not even thinking about what they might imply about people in those oppressed groups. How they affect (in the order of the phrases) women, homeless people, fat people, gay people, people who have learning disabilities and those who suffer from mental health problems. This is why saying “but I didn’t mean it in that way” is problematic. And that is where we get the most resistance. People will say “you know very well I’m not ACTUALLY talking about gay people when I say ‘oh, that’s a bit gay.’” But then why use their name as an insult?

Firstly, if you believe that your intention excuses the end result, you are being rather insensitive. You probably wouldn’t step on a stranger’s foot deliberately in a crowded bar, but if you did it without intending it, you would probably be sorry. (I don’t know about you, but I’ve even apologised to items of furniture more times than I can recall after mistakenly believing they were people’s feet that I was standing on.) And if someone politely pointed out that you were standing on their foot when you hadn’t noticed you were then I bet you would apologise and move your foot rather than saying “But can’t you see I didn’t mean to stand on your foot? It’s ridiculous to expect me to see the floor in a place this crowded. I’m not going to move my foot, because you should realise I didn’t stand there on purpose.”

The point is that you are hurting people, whether you intended to or not. Avoiding that is hard; of course it is. Acknowledge that and be gentle with yourself, but if you use it as an excuse without making an effort to change, then you are contributing to oppression. You might think “you can’t expect me to change the way I speak – it comes naturally to me.” Yes, it takes work. But if you aren’t willing to do that work then you are implying that oppressed groups aren’t worth the effort it takes to challenge their oppression and respect them as equals. You were brought up not to treat those people as equals: society bombards you with constant messages that reinforce the status quo of inequality, so the unlearning process is huge.

Secondly, if you use a group of people to insult someone or something, then what you are doing is “othering” that group (the first sentence of this article gives a good definition if you’re unsure what that means). You are implying that they are somehow “less than” and therefore that comparing someone or something to them is insulting or lowering.

Let me tell you now, I am as guilty as this sort of behaviour as anyone else. I’m not preaching from some pulpit of self-perceived perfection here. This article is as much to help me change my own behaviour as it is to help you examine yours. It’s OK if something slips out unintentionally from time to time, because that is how we have all learned to behave. As long as we make an effort to address it, that is. How we respond is up to us: the more we watch what we say and the more we correct ourselves, the better we will be at avoiding it.

Calling other people out is even harder because often they will be defensive or put up a lot of resistance. Some people will just go, “Oh don’t be ridiculous!” Not everyone will listen. In these conversations, I try to say “I can see why you think it’s petty, but we don’t know what it’s like to be [part of the group in question] and experience discrimination because of it. I avoid using that word like that because it can really hurt [group of people].” They won’t suddenly have an epiphany and go “Gosh, you’re right, I’ll never say that again!” but you may have sown a seed that others will water. And I continue to model respectful language myself. If someone is inclined to use discriminatory slurs, they will do so more if other people around them do the same. Changing our own behaviour is a small start, but it is a start.

You might well hear “but there aren’t any [gay, Asian, fat] people in this room so who do you think I’m offending?” There are two problems with this. The first is that it isn’t the gay, Asian or fat people perpetrating the oppression of their own demographic groups, although people within oppressed groups can contribute to their own oppression (for example, women can subscribe to sexist norms and say misogynistic things. I know I have in the past). It’s the rest of us who need to stop causing it. Even if your gay friend can laugh off and even use homophobic insults, that doesn’t mean they represent the entire LGBT+ population or have never experienced the oppression that is still tied up with language.

Furthermore, if you only treat people with respect when they are in the room, then you are not treating them with respect. Insulting people when they are not even there to defend themselves is not very nice, if you think about it. It’s another example of othering: there are us in this room having a laugh, and them outside the room: we have to be careful what we say if they come in! And if you continue to use “jokey” slurs about people in their absence, then you are just reinforcing the idea that it’s OK to do so. The idea that a certain group of people (say gender non-binary people) are such a small minority that it’s ridiculous to expect everyone to go out of their way to cater for those people is equivalent to saying “there are not enough of these people to make them important enough to care about.” You are erasing that minority, making them invisible and thereby contributing to a culture that refuses to meet their needs.

I believe that every human being is important. And that every human being is as important as every other human being. It doesn’t depend on how many other human beings we think fit into the same little box as them, or how much we think their existence affects us personally. We assume that groups don’t exist or are a negligible minority just because we don’t personally know people who fall into the category. In fact, people you know could be part of that group but choose not to tell you, perhaps because of the discriminatory attitude you had no idea you were showing. A lot of people do not identify with the gender they were assigned at birth or aren’t exclusively attracted to those of the opposite sex or are devoutly religious but they aren’t obliged to tell you any of those things. People who say “everyone is different so it’s impossible to cater to everyone’s preference” are missing the point. It’s not about personal preference. If you don’t know who you are or are not “allowed” to insult, then how about not insulting anyone?

Another problem with the idea that words spoken between friends won’t offend any of Those People lies with the whole concept of “offending people.” Those who wilfully miss the point of anti-discriminatory behaviour very often use this. I remember a conversation I had with someone who was outraged that their children’s school had decided to have secular assemblies rather than focusing on hymns and Bible readings. They said, “It’s pathetic! We can’t even have traditional Christian assemblies for fear of offending some Hindu or Muslim! Why can’t they go somewhere else if they don’t like it?”

Well, it seemed to me that the person objecting to secular assembly was the one who was offended, not those they were trying to exclude. My response was, “Why should they be the ones to go somewhere else or be educated in a religion they don’t belong to? If you want your children to have a Christian education and you don’t like secular assemblies in a secular school, why didn’t you send your children to a church school? There are a lot more C of E schools in this country than there are Hindu or Muslim.”

(Those who protest that “this is a Christian country” might want to pause and consider how Christians came into this non-Christian country in the first place and appropriated the culture and celebrations of the Druids and Pagans and other ancient religions in order to wipe them out. This is NOT what is happening to you, but it is what you are trying to do to others. You still get the choice of going to church and celebrating Christian festivals however you choose.)

But what I didn’t address was this really problematic concept of “offending people.” It’s yet another tactic, like the concept of political correctness, used to minimise and dismiss the struggles of people in oppressed groups.

Most Jewish people would be no more offended to see a Christmas tree in a shop than I would be to see a menorah (i.e. not at all). We need to stop assuming that we know how people we don’t know – and clearly don’t try to understand – would feel in a particular situation. People in minority groups aren’t automatically so thin-skinned that they take offence at everything that doesn’t fit with their culture. They aren’t all weak, delicate little flowers that need constant pampering. But they do live in a world that constantly others, belittles and marginalises them. Talking about them taking offence to what’s portrayed as stupid little things is effectively saying that the problem lies with them, rather than with a society set up to keep them away from privilege. And that in itself is both oppressive and insulting.

I remember recently seeing a statement from a large organisation apologising for “offending” women after publishing something that promoted rape culture in pubs and bars. My response to this non-apology was to point out that offending people doesn’t lead to them being sexually assaulted in pubs. Don’t apologise for feelings you assume other people have. That’s taking the blame off yourself and putting it onto them. Own up and apologise for what you said or did. Language is important!

So we know it isn’t “offending people” that’s the problem. It’s perpetuating a situation that excludes them from things the dominant group can take for granted. It’s denying them access to privileges that the dominant group feel they have a right to. And if they have that right, why doesn’t everyone?

So let’s stop talking about having to walk on eggshells to avoid offending people. Let’s try thinking about including them instead. Our language is a great place to start, since it shapes how we think and vice versa. You can’t change how people think, but you can change how you use your words.

Please feel free to discuss your own experiences in the comments!