Tuesday 16 July 2019

Disabled Pride and "I don't see you as Disabled"

Hello my lovely loves,

Today I wanted to talk to you about something I’ve seen online, particularly as the summer includes a lot of Disability Pride events.

Recently a hashtag spread around twitter - #disabledcompliments - and I want to address it a bit. 

It’s similar in a lot of ways to my post on the “You Don’t Look Sick-ers” and my guide on “What not to say to Sick People", but it’s been a little while since then and I just wanted to update my thoughts on it, because there was one thing that cropped up that I don’t think I mentioned in those posts.

"I don’t see you as ‘disabled'.”

This is a fairly common thing to hear, and it’s pretty clear that those saying it think they’re paying you a compliment. 

I’m going to give you a hint here - it’s not.

“Don’t worry, I don’t see you as…” never ends with a positive statement.
The most common way of ending that sentence is with something negative. Lazy, stupid, bossy, weak, whatever it is.

When someone says this then it’s to reassure someone that they’re not something bad. It’s a statement of commiseration.
And even if the person saying it loves the disabled person, they’re still saying that they think negatively of the disabled community at large.

The disabled person doesn’t stop being disabled because you said that. They know they are. They now also know that you think being disabled is inherently negative.
You’re also signalling that you’re less likely to help them with things on the basis that you don’t think they’re disabled enough to require it.

Not being considered disabled, or disabled enough, is a legitimate health risk for a lot of us. It means we’re less likely to be given access to support (monetary and otherwise) and things we need to live a healthy life. This is especially true of those with invisible illnesses.
If someone said “I don’t see you as ‘having a severe peanut allergy’” to someone with a severe peanut allergy, it would a. be ridiculous because they do, and b. make them extremely wary about eating anything the person got them.

I don’t like being disabled by my chronic illness, but... my chronic illness happens to be very disabling. Some people’s might be less so, we are not one homogeneous entity. Some may have had their illness or disability their whole life. They likely see it as an integral part of their personalities, just like being left-handed, or gay, or particularly keen on avocados.
Those differences don’t make a disabled person lacking.
Whether we like it or not, those illnesses or disabilities are a part of us.

It is not for you to presume that someone dislikes a part of themselves. 
If you came up to someone, particularly a stranger, and said, “don’t worry, I don’t see you as ‘ugly’”, that would not be a compliment.
And if you replaced “disabled” with any other minority group? Still looking like a compliment? No. You would sound racist/sexist/homophobic/transphobic/etc. Because that’s what you'd be.

You do not get to decide what someone is or isn’t, and you do not get to decide whether the thing they are (or aren’t) is acceptable.

This issue relates very closely to the “don’t let your disability be your identity” trope. Disability or chronic illness is seen as something so negative, that the concept of being proud of it or including it in our outward persona is completely incomprehensible.
It’s often framed as a tool to try and motivate the disabled people into more fulfilling lives, but the key here is that people think that “fulfilling” means “as an abled person lives”.

This concept is so ingrained that it’s usually impossible to comprehend someone living a fulfilling life AND being disabled. People assume the two are mutually exclusive.
And therefore that anyone who isn’t pursuing an abled concept of living a fulfilled life is giving up on being fulfilled in life (or life itself) altogether. 
It’s often those who struggle the most to seem “normal” and don’t talk about their conditions that are the most rewarded by society, even if doing so is injuring them or exacerbating their problems.
When people accept their conditions and take steps to make their lives easier, especially if that makes them appear more visibly disabled, is when they’re considered to have given up.

“Giving up on life” is bandied about A LOT. But giving up on an abled life is not giving up on life. It’s knowing your limitations, accepting them, and living the most fulfilling life you can.
And EVERYONE, disabled or not, has limitations.
I’d argue that most abled people are not able to live the most fulfilling life they want to either, because very few people have the access to the funds, or support necessary to do so. Perhaps they suffer from another kind of discrimination that prohibits them from doing things they’d otherwise enjoy. 
Very, very few people achieve all their dreams in life.

There are things in this life that I know I may not get to do because of my condition, and that is heartbreaking. But, there is absolutely no guarantee I’d be given the opportunity to do them if I wasn’t sick. None. That is life.

Some people do achieve things, amazing things, with disabilities. And I’ve spoken about this in a previous post on inspiration porn, which is where Disabled People Achieving Things is held up to society in general as proof that humans can do anything IF THEY JUST PUT THEIR MIND TO IT (and looks down on those who don’t excel or achieve these things).
Disabled and chronically ill people are treated both as less than human and more-than-human. Often at the same time.

After a while, all of that starts to make you think of it with less equanimity. Even the most earnest “inspirational” video can come across as, “well if a DISABLED PERSON can do it, just think what THE REST OF US could do!”

When society continually puts people like you forward as inspiration fodder, but looks down on those of your group that don’t excel, it can make you feel jaded. It can make you feel ashamed of who you are, because we are no less immune to these assumptions than anyone else.
But it can also make you double down, and feel all the more determined to be proud of who you are.

I don’t pretend to know everything about this subject: our issues are complex and I can’t speak for such a massive, diverse group, but I know this. 
We’re not performing monkeys. 
We aren’t here to make people feel good about themselves, or to push them to try and make something of themselves, or teach some grand, important lesson in life. If someone learns something, fine, but we’re not background characters in an abled person’s life, we’re the stars of our very own technicolour stories.

Yes, we have issues. We have to do things differently, or not at all. But, you know what? So do lots of people. I can’t go run a marathon. A lot of abled people can, but... they don’t.
I can draw, pretty bloody well, actually. A lot of abled people can’t.

We’re not more or less than human. If anything we are a concentrated version of humanity. Its ingenuity, its flexibility and ability to cope with change, its perseverance, and yes, its pain, its struggles and its lowest moments, where sometimes there is no recovery.
We are the most diverse minority, with people from every race, religion, age, gender and sexuality. We are a microcosm of all the ups and downs in life, and all the ways people can respond to them, is displayed in each of us.
When you look at us we’re not subhuman, or superhuman, we’re arguably the most human humans.
And one way or another, by accident or age, you’re probably going to be one of us. And that’s ok. You should be bloody proud of it. 
Because we are.


H

5 comments:

  1. Hello, fellow spoonie here, thanks very much for this post, more please :) I'm learning about all this and challenging myself.

    One bit I don't know how to accept is that you say disability is not inherently negative. I understand that conceptually and it seems to be an important part of the disability activism narrative. But practically, being disabled for me means a huge loss of freedom. How is that not inherently negative?

    I am oppressed by my symptoms - that's a lot worse than whatever prejudice from people I face.

    I am aware that if I was born with a disability it would be a totally different experience- I wouldn't have experienced what it is like to be able bodied. I know what I am missing. It is much more difficult to be disabled than able bodied. It is a lot easier to live a happy, fulfilling life when you don't have to deal with such limited freedoms.

    I do appricate the gifts that being disabled has brought me - learning to be very calm, to ask for help, to listen to my body, etc. Is this how to try and make myself believe that being disabled is not inherently negative? I'm not convinced that these gifts outweigh the difficulties that have come with being disabled.

    I would really appricate any thoughts anyone has to share on this. I would really like to be able to understand better.

    ReplyDelete
  2. people views/judgements about any disability are very Snotty Nosed .they never see the every day effects.i have m.e .
    migraines .ibs the list gets longer/i take part in a lot lot research
    my blog,http;//mark-kent.webs.com
    twitter,supersnopper

    ReplyDelete
  3. I think this is a very good point, and a difficult thing to pin down exactly, but the way I see it is that while the effects of the disability itself may be negative and make life difficult, it does not mean that having a disability makes you lesser (or more in the case of inspiration porn).
    It is the othering of disabled people that is negative. Having hay fever sucks, but people don't treat people with hay fever differently (for better or worse) because they don't perceive the person as different from them.

    The point is that having a disability just mean you're not a whole and complete person.
    The disabled label changes people's perception of that person negatively and that's wrong. The word isn't negative. It just is. Like left-handed. Or tall. It's a descriptor.

    ReplyDelete
    Replies
    1. Thank you for your reply. Ok, so I think what you're saying is that being disabled does not make you lesser. It's just a facet of one's identity. I agree with that. (Btw have you been following #WhenICallMyselfDisabled ?)

      Still not sure about disability not being inherently negative, at least in my experience of my own disability (I can't speak for anyone else). I do have days where I can feel neutral about it, and it does help if I'm not dealing with any judgement from others.

      Maybe the distinction btwn oppression by one's symptoms and oppression from other people is a useful one. There's an idea that we are disabled by our society rather than our symptoms. That idea doesn't quite work for ME/CFS in many cases. Society could change a lot and help us a lot, but however much it changes, short of finding a cure, it's not going to mean I can socialise more than once a week, be able to think clearly more, be able to dance as much as I want, etc.

      Delete
  4. lets look at it this way.i am married .my wonderful attractive wife Tabitha .People have come up too Tabitha and said..
    HOW COULD YOU MARRY A PERSON LIKE THAT...HOW COULD YOU HAVE
    CHILDREN WITH A PERSON LIKE THAT ,..my wife Tabitha is very
    very Normal .YET MARRIED TOO ME A DISABLED PERSON ..
    BECAUSE I am Disabled PEOPLE EXSPECT MY WIFE Tabitha TOO BE
    DISABLED mark

    ReplyDelete