It’s not about you

This post is probably going to cause a bit of discomfort, because in it I am going to talk about some uncomfortable things. I will be writing my truth and I will be calling for abled people to take note of my disabled perspective. I hope that any feelings of discomfort can be seen as learning opportunities or just seen as my experiences. I would like to encourage people who do find this confronting, to not blame me for these feelings, and to not resort to tactics that would allow you to shirk away from hard feelings and to place the onus on me in any way. Ableism is a big deal to us disabled folk, whether we agree with one another on various things or not, and we deserve to be listened to without the abled speaking over us or making our lives all about their own feelings as opposed to our rights to safety and opportunity.

Many people self-appoint themselves as allies to, or supporters of, the disabled. Many of these people are involved in other things such as advocating for rights for other minority groups. Others are not necessarily involved in these arenas but are confident enough that they believe themselves to be progressive and supportive in regards to the disabled. I have noticed in my own communities (online and in person) that not many people will openly say that they don’t support the disabled.

However, I have also noticed that people have no idea how to be truly supportive of the disabled. Here are some things I have noticed people will do, while believing this to be supportive:

  • Lament that our lives must be so hard and awful because we are disabled
  • Be nice to us in a patronising way
  • Tell us that they see us as *our name*, not as a disabled person
  • Tell us that they ‘can’t imagine’ how hard it must be to be us
  • Insist on using Person First Language
  • Tell us stories about someone they know who has a similar disability to us
  • Tell us we are inspirational or use something we do as ‘inspiration porn’
  • Tell us stories about how they were kind to a disabled person once
  • Ask us questions about our disability and medical history because it is ‘fascinating’
  • Tell us they ‘don’t see disability’ or that they ‘consider everyone as just human’
  • Give their opinion about us to us constantly, as though they have something to teach us

There are probably more things but that is enough to be a selection. In reality, these things are not helpful to the disabled. In fact, they are unhelpful! The abled so often think they are doing us a huge favour by simply not abusing us. If we explain that they are actually not helping, people will often start venting about their hurt feelings, their good intentions, and generally just speaking over us and making the issue all about them.

This isn’t okay and I want to be really clear about that.

If you want to support disabled people, then you need to listen to them. You need to read what they write, hear what they are saying, and then understand that they have experiences that you don’t have! We don’t all get born into the same situations, we don’t all have upbringings and lives that are the same, and oftentimes groups of us share experiences that the majority of our communities don’t share. This means, naturally, that we have worthwhile things to share and say. Things that you can learn from because you don’t know what we know.

I had an online encounter today, where I mentioned the Social Model of Disability and a few other research leads for someone contemplating the place of disability in their family’s life, and I self identified as disabled. I also explained that parents of disabled people often use their bigger platforms and loud voices to try to drown out the voices of disabled people about disability issues. Someone else took offence and told me I was making ‘huge assumptions’ and that they were not comfortable with what I said because it ‘felt yuck’. They also told me they see everyone as human rather than as disabled or not.  It was a bit like a Bingo of shitty ableist things not to say to a disabled person speaking about disability. This is such a common thing that I am not even surprised when people say things like this. I am constantly being framed as the big, bad, disabled person being angry and aggressive at everyone else. It is framed as ME having an issue rather than as someone being a complete tool by making something not about them, all about them. That tantrum of trying to make something about them just because their ego was challenged, is so common that I expect it every time I say anything about ableism.

And honestly, I am so tired of abled people making disability issues all about them! OUR LIVES AREN’T ALL ABOUT YOU! There are probably thousands of times this has happened to me when talking about disability. People seem to think that they are entitled to throw (strongly) their abled voices into a discussion about disability, instead of making room for actual disabled people. We already have a hard enough time being listened to, and we certainly don’t need people who have no idea saying things like “Well, I think…” or “in my opinion…”, “That is a generalisation…”, “Not all of us are like this!”, and then taking space and time away from the disabled.

We are the ones living with ableism constantly. We are the ones with lesser opportunities for early childood safety and nurturing. We are the ones inundated with intervention from birth that is often based in ableism and pathology rather than our happiness and health. We are the ones faced with constant barriers to education. We are the ones who are struggling in accessing our communities, friendships, work, university, and basic things like medical care, shopping, housing, welfare support, and parenting support. We are the ones who might receive intervention from authorities when we become parents for no good reason other than that we are disabled. We are the ones having to fight for basic accommodations, while being told that it ‘isn’t fair’ for other people because ‘they don’t get special treatment’.

We are the ones who need to be listened to about these important issues, and no, you are not entitled to give your opinion up alongside ours just because you have one. This is not being ‘mean’ or ‘exclusive’ – this is about giving disabled people a platform. Because we usually don’t have one at all, we historically didn’t have one at all, and we don’t regularly have one as we go about life. Your abled belief that you are entitled to an opinion about everything is precisely why we don’t get heard in the first place. Your abled beliefs that we are second class versions of you, is why we are in this position at all. Your abled beliefs that we should be acting more nondisabled so as to save you all the hard work of accommodating and including us, is why this is a problem in the first instance. So, please trust me when I say that I have had it up to here with your opinions about disability and I don’t want to hear them any more.

This seems to be a very hard notion for many people in positions of privilege – the notion that you do not have to give your opinion and explain your feelings everywhere you go. I believe that many people, who have been nurtured by society and constantly had their hand held along the way by whatever privilege they have, have gotten so used to being listened to all the time that they don’t seem to care that we are fighting for something they have taken for granted their whole lives. And they don’t seem to realise that their opinion isn’t the right thing for all situations. It must be nice to be listened to throughout life – some of us are only just realising we deserve that too.

People may feel uncomfortable or upset when they realise that ableism exists or that they have been perpetuating it without knowing. This is understandable. However, it isn’t okay to make your feelings more important than the issue itself. How outsiders feel about ableism is not more important than ableism. I do not need to hear all about how sad or uncomfortable you are that I have brought up ableism. This doesn’t make me the Emotion Police; it means that you can feel however you want but that your feelings are not my responsibility. I am not going to keep jumping through your hoops of expecting me to be the ‘bigger person’ – seriously, I have enough on my shoulders already without also pandering to your abled tears.

Another recent online encounter I had involved me expressing anger that disabled people were not being consulted in the training of people who work with the disabled. Training was being created that centred the opinions of carers of disabled people, but not of disabled people themselves. I am going to guess that those making this training package had taken on board some work of the disabled but were not featuring their opinions or crediting them. This is a familiar pattern! Disabled people write and talk about ableism, for free, and then other people profit from it while we remain in poverty or underpaid. And our carers, while being our main abusers statistically, are continually getting the limelight on disability issues. The person I spoke to about this problem, told me I ‘couldn’t prove’ that no disabled people were consulted, and that they were uncomfortable.

It really isn’t my problem that my oppression makes you sad. What is my problem, and the problem of other disabled people though, is the oppression itself.

I would like to ask at this point, that you don’t complain that I have ‘labelled’ you as abled, and/or that you don’t nitpick on some other small detail in this post. Your being abled (or having abled privilege) as opposed to disabled is directly relevant here, because you are as much a product of ableism as I am – only you have received more opportunities than me because of being abled, while I have had barriers in my way because of being disabled. Please don’t derail by picking at things like language or tone. These also are not more important than ableism!

If you want to truly help disabled people, being patronising, nice, and seeing us ‘not as disabled but as a person’ is not enough! In fact, that stuff is one huge fail. You have to respect us, respect our word, respect that we know our lives and selves better than you do, and respect that we deserve human rights and inclusion in our communities. You have to recognise that your feelings and opinions are not inherently more worthy of respect than mine just because you are abled – this in itself is a product of ableism by the way, whether you’re doing it consciously or not. You need to believe us (and listen to us) over our carers. You need to not look upon us as burdens to the Real People, and start to see us as valuable, worthy, and okay human beings. You need to stop drowning out our voices with yours. We have a long way to go and even if your life is peachy and you happen to believe that the disabled are safe and have heaps of opportunities (because you have never seen otherwise), that doesn’t make you right and that doesn’t make you an expert. You are never entitled to throw an opinion at us just because you have it. Yes, you have free speech but so fucking what?! That doesn’t mean your opinion is valuable and it doesn’t mean you have the right to take space away from the disabled about these issues.

Many people say to me that ‘everyone deserves to be heard’ and perhaps I would agree. However what this opinion doesn’t consider, is that not all of us have access to ways to be heard. Not all of us are listened to. Not all of us are on equal ground. When there are power inequality issues, the idea that everyone should be equally heard doesn’t work because what about those with power over others? What about people who are always speaking over others due to these power imbalances? What about those who are already stomped upon and silenced and who then get argued with in the few spaces that they can get an opinion out? What about those who make up less numbers and so who never have a chance at getting their words out there without all the majority opinions squashing it down? What about those who are downtrodden and need to explain this to people because they don’t know it is happening? And why should those getting spoken over and steamrolled all the time just sit there silently while others yell their opinions over and over again, just because those people allegedly ‘deserve’ an opinion too?

I want to say this again, to put it in clear terms;

  • Disability issues aren’t all about you
  • You are not entitled to give your opinion everywhere you go just because you have one
  • Abled people have many things they can learn from disabled people. Believe it or not, you do not know better than us about disability!
  • Your feelings about ableism and how uncomfortable this notion is, are NOT more important than our human rights and the real-life difficulties we face because of it.

Thank you for reading and please remember that feeling uncomfortable about this content is okay and even likely. And I would like to remind you to please work with this discomfort and use it to understand more about disability issues. Please do not use your feelings to throw back at me or other disabled people. Please don’t make your feelings more important that the issues faced by the disabled. And please respect my word and experiences as valid, even if you have no experience with this.

There are a heap of disabled writers you can seek out to learn more about ableism and to help disabled people to thrive in the currently very ableist world they live in.

Ally.

 

4 replies
  1. Zoe
    Zoe says:

    Hi Ally, I really enjoyed reading this and will definitely remember this post in the future. I have a question, I’m studying occupational therapy and at uni they really like us to use person first language, but in this post you’ve mentioned it as something that is not supportive for people with disabilities. Can you explain to me why?

    Reply
    • Ally Grace
      Ally Grace says:

      Hi Zoe, thank you for reading and for your comment. Yes, I can explain why I used Person First Language as an example of a way the non disabled often try to show support for the disabled; which falls short of true support.

      Some communities of disabled people do generally prefer Person First Language. Other communities generally prefer Identity First Language. Some individuals will prefer a certain way, so this should be respected because it is always someone’s choice as to how they identify. There is also a way of viewing diability called the Social Model of Disability (as opposed to the Medical Model), which has impact upon language too.

      In my post, I did not mean that Person First Language is never helpful – as surely it is to specific communities who prefer this, and to individuals who prefer this. However, insisting on using it all the time instead of actually asking people how they prefer to be referred to (or in some cases ignoring how they prefer to be referred to); is disrespectful and unhelpful. Disabled people will often write articles or speak about their lives; and then nondisabled people will start insisting that they are referring to themselves ‘wrong’ and that they should ‘always’ be using Person First Language. . Many communities specifically ask to be referred to in Identity First Language, as a deliberate political decision – yet we remain largely ignored while professionals and others insist they know better than us about this. It is also a problem when the anger of the nondisabled about how we speak of ourselves, is more important to them than the ableism we are discussing – so it has often be used to derail more important things too. Something I read online in comments sections a lot is “You lost me at autistic. Always put the person first!” This is an example of derailing from the topic at hand as well as ignoring the obvious preference someone has just displayed for referring to themselves or someone with the same disability as them.

      Many of us hear “put the person first” and are also reminded that people have so little regard for the disabled that they must constantly remind themselves that we are people. There are a lot of autistic writers whom have written about Identity First Language, if you wished to read a bit more from that community. Researching various disabilities and people who make up those communities could help you gain more understanding too. There are generally histories of communities, which could help explain a little more about why certain communities lean toward certain ways of self identifying and wanting to be referred to, while others have different norms and preferences. Disability Culture is a very cool and interesting topic.

      Thanks again for your comment! I hope this was helpful and please do ask again if you would like more help.

      Reply
  2. Kate
    Kate says:

    Gosh, I felt guilty reading this. I havd autism, as does one of my sons, and I get accused of making things about me all the time. I don’t mean to; it is my way of attempting to understand others and to clarify I am getting the point.

    Reply

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