BADD – People don’t listen

If you’ve read my blog much or know me in real life, you’ll have gathered that I differ significantly from some platonic template of “Humanity” in a number of socially undervalued / undesirable ways – which is to say that I’m disabled.Humans are all really quite different from each other and we all accept that – but some differences are seen as deficiencies, as problems, as wrongness. Part of the social model of disability is the idea that it was never set in stone which differences would be considered just differences and which would be considered problems. More excitingly, it still isn’t set in stone. Some “problems” can cease to be problems.

My body and my brain deviate from “standard issue” quite a bit. Increasingly, in fact. I have never been and never will be what is currently understood to be “normal”. For the most part, I’m okay with that.

Other people aren’t. They won’t all admit it but a lot of people seem to find people like me – disabled people – pretty disturbing. How do I know this when most other adults won’t straight up call me freak or cripple? I know this by people’s reactions when I talk about my impairments (i.e. the differences about my brain and body that my society considers to be deviations and problems).

When I talk about my autism, dyspraxia and dyslexia, I tend to be fairly upbeat and straightfoward. I like my brain, I’m used to how it works, I am in many ways a master of using it to learn and I know how to turn my differences into advantages. Whilst I wish there’d been more support for me when I was a child, for the most part I enjoy my neurodiverse brain and I get on well with it despite the difficulties I have navigating a world that wasn’t really designed to accommodate people with brains like mine.
When other people hear about my autism, dyslexia and/or dyspraxia, they say things like “I’m so sorry” or “That must be really terrible for you”. They use words like “suffers” to describe my life with my brain and they tell me I’m “really brave” and “an inspiration” for getting a degree. Basically, they treat my life long learning differences as though they are inherently and always a bad thing. They talk over me and instead of listening to how I feel, they end up telling me how they feel and how they think I ought to feel.
They are scared and sad and confused. They don’t want a brain like mine so they imagine I don’t want it either. But I like my brain and it would be scary and sad and confusing for me to contemplate having a brain like theirs instead.

When I talk about my chronic illness and the physical limitations and pain and tiredness that go along with it, I still expect people to agree with me that chronic illness is awful and to be sympathetic. This isn’t usually what actually happens.
When I talk about my chronic illness, I talk about constant wide spread pain, persistent exhaustion, unfulfilling sleep that nontheless takes up 11 or 12 hours of my day. I talk about the sadness of seeing my ability to walk slowly fade away, the fear that words like “incurable” and “progressive” fill me with, the grief of having to contemplate that I will likely never walk without mobility aids again. I talk about not having enough energy to walk to and from the campus shop, of having to cancel plans with friends because I’m in too much pain to get out of bed. Frankly, I talk about how this is my lot in life and G-d seems to be taking the fucking piss by giving me all this to learn to live with.
People nod and look concerned and then tell me I need to exercise more. Or eat more fruit. That a “strapping young man” like me should be off playing football. That I should get out more or see more people. They suggest alternative therapies and guilt-trip me later for not trying them. They suggest the “obvious” healthy living advice (more exercise, better food, positive thinking) as if I wouldn’t have tried that first. They tell me to look on the bright side, they insist without evidence that a cure will be found soon, they outright tell me I could walk fine if I just tried harder. Again, people talk over me but this time it’s to minimise my experience, to make it sound less painful, less awful and more easy to fix. They never tell me I’m still valuable even if I can’t work, they tell me I’ll soon be able to work. They don’t tell me “That sounds really difficult to live with” they just insist that things will get better soon.

When I talk out my mental health problems, people don’t even know what to say.

All I can gather from this, years’ worth of evidence from countless conversations is that people have their own ideas about disability and illness and they’d rather believe them than listen to my actual experience. They’d rather believe that learning difficulties are awful and tragic than accept that I love my brain and they’d rather believe that chronic illnesses are temporary, easily cured and never affect the young than listen and help me with the grief that is forming part of my process of adapting.

I want to end on a positive note so I’d just like to say thank you to everyone who has ever listened to and accepted my own thoughts and feelings about my experiences of my impairments. You’re rarer than you should be and you make me feel like a real and valid person. Thank you.

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Access needs – not what people seem to think they are

So, unless you’ve genuinely never come across disabled people’s activism before, you probably have a vague idea that there are different models of disability and a rough grasp of what the Social Model of Disability is. I’m not going to assume any prior knowledge here so consider the first part of this post to be a quick intro / catch-up lesson on the Social Model. Skip intro.

Two Models of Disability

There are more than two models of disability that people have come up with but there’s two directly competing models which underpin most people’s ideas of what it means to be disabled. Whilst no one actually thinks that any particular model is exclusively right for all disabled people all the time, to a certain extent you can tell what model(s) a person has internalised from what they say about and to the disabled people they encounter.
The two models that underpin most people’s thinking are:

  • The Medical Model – disabled people are disabled because they have bodies and/or brains that do not work properly. The way to solve this is to “fix” the individual person’s body/brain until it functions normally or at least looks like it functions normally. It is sad that some bodies/brains simply cannot be “fixed” in this way and those people will be unable to fully participate in life because of they way their bodies/brains work.
  • The Social Model – disabled people are disabled because society has been built by and for abled people and in a way that actively excludes disabled people. Buildings, policies, cultural practices and everyday objects have been created with a false norm of human ability in mind. This norm can and has changed – the normal human is now expected to be able to read (making those whose brains do not find reading easy excluded) and glasses are inexpensive and easy to wear (meaning people who would have been regarded as blind a century or two ago an be fully included). The solution is to challenge and change the norm to include everyone, with no expectation that all adult humans will share some particular abilities and products and practices designed with the intention to include as many people as possible. In the mean time, making adjustments to practices, spaces and expectations to intentionally include whose who are often excluded – for example providing large print menus in a cafe, hosting autism friendly film screenings or rearranging a meeting to a space that is already wheelchair accessible.

The essential difference between these two models is where they locate the “problem” of disability and where the solutions. The medical model places the problem of disability on the individual – it is their body that is wrong where the social model places the source of the problem with society for not trying hard enough to be inclusive. The medical model places the responsibility for solving disability into the hands of doctors and doctors alone. The social model places the responsibility for solving the problems caused by disability onto every single one of us to do what we can to ensure that we are not accidentally shutting people out.

For more on models of disability, try this art piece by Ju Gosling or browsing the various models on this site or reading this booklet.
There’s a lot more information available on the internet about the various models of disability.

Right, having gotten through or skipped over my badly-worded intro to models of disability you can now get to the main post.

I’m a disabled person, I’m also a student and an active participant in my student union’s politics as well as it’s social events.My SU, the NUS as a whole and my University all currently have policy that says they support the social model of disability. This means that they have policy which says that they do not consider disability to be an individual problem to be worked around by the individual disabled person but a societal problem that it is up to everyone to work to solve.

So far so good. Yet, in my dealings with all three institutions, the University, the Union and the NUS, I’ve seen a pattern of actions that suggest that whatever model of disability they’re using it isn’t the social one.

This pattern concerns asking people what their access needs are.

Asking people what they need is a good thing and I commend the Union for asking all candidates for the recent elections to provide their access needs and the NUS for asking this of all those who attend their conferences BUT in both cases this question was asked of people who had little or no idea of what they were going to do and so no way of working out what they would need in order to access the election / conference. My University does not ask all of its students for their access needs but does ask those who identify themselves as disabled – again usually before they have any idea what their course will involve and can only guess what kind of help they will need.

What follows is often a very inaccessible event where the Union / NUS / University can say “But we asked you what you needed and you didn’t tell us!” or “But we did what you asked us to do!” and claim that they have been as inclusive as they possibly could be.

This betrays that the people who ask the question “What are your access needs?” don’t really understand what they’re asking and are possibly slipping into thinking of “disability” as an individual’s problem caused by the way their body works. Disabled people do not have handy lists of our needs that we can email you as the answer to that question and it would be useless for us to try to make such lists in the first place.
Why? Because I don’t have access needs full stop, I have access needs with reference to particular activities. I can only tell you what adjustments and help I will need if I have been given full and clear information about what I will be expected to do. Without this information, I am left guessing and asking myself things like: Will they expect me to stand for more than five minutes? Or navigate a crowded room on my own? Or walk up and down any stairs?

I’ve run in student elections here and helped other people to run. Apparently, the organisers of student elections here thought they could assume that all candidates could: walk down a flight of stairs, climb onto a two foot high stage with no steps, get themselves home late at night, be at events every evening for over a week, see powerpoints that were not described, stay for hours in a loud, crowded room with flashing lights etc etc Am I to guess that all these things will be expected of me? I don’t think they are reasonable expectations at all – and those expectations are  disabling.

Actually following the social model requires being actively inclusive – making sure every event is as accessible as possible. Which means ground floor level access, no assumption that every one can read the powerpoint, making sure people will be able to get home from late night events, making sure you’re not expecting people to repeatedly attend both late night and morning events, all speakers using the microphone, sensible volume of music and somewhere quiet set aside to go, seriously questioning the use of flash photography… Yes, it requires a lot of thought and it seems easier to just lay the responsibility with the disabled people themselves but really when you won’t put the thought in to make what you do as accessible as it can be, the message us disabled people take home is that we’re not really wanted and your event isn’t for people like us.

So, to sum up:

  • Put thought and effort into making your event as accessible as you can to begin with.
  • Get out as much clear and detailed information as possible about what will happen at the event in advance.
  • Include specific information about access in advance. Use something like this access statement generator.
  • If you know who is attending the event (i.e. candidates, speakers, delegates etc) provide them with all the access information and event information and ask them to contact you if they need any access adjustments or want to clarify something.
  • Make sure all possible attendees know how to contact you if they need specific adjustments you’ve not already thought of or extra information about access.
  • Congratulations, you will have done the bare minimum in actually following the Social Model in creating your event.