What Non-Disabled People Get Wrong About Accessibility

I’ve been working on this for a couple of months but it can be for Blogging Against Disablism Day 2017

I’m disabled. So are both my partners. And most of my siblings. And 85+% of my friends.
This is partly because there are a LOT of disabled people in the world, with most estimates at somewhere between 15% and 25% of people being disabled in some way. It’s also because of the way that abled (or non-disabled) people Just Don’t Get It in a million tiny huge ways that add up and can make being their friends or partners noticeably more difficult or more tiring than being friends or partners with other disabled people.

It’s not their lack of disability itself that is the problem so much as that we all live in a very disablist (ableist / anti-disabled-people / disabling) society and we’re all unlearning a load of bullshit we’ve been taught about disabled people… and those of us who are disabled tend to unlearn this stuff faster.

Because we unlearn this stuff by hard experience. And abled people have to unlearn it by listening to disabled people and treating us as the experts (in a society that constantly pushes the idea that disabled people are the last people you should ask about disability after our doctors and carers and families…) or by becoming disabled themselves and learning it the hard way.

So: What Abled People Get Wrong About Accessibility

1. Treating access as an optional extra, last minute adjustment or add-on

I’ve lost count of the number of times I’ve had to interrupt a discussion of an event being planned to ask “But how can we make it accessible?”

Interrupting because accessibility hasn’t come up yet and doesn’t seem likely to come up any time soon. If you’re deciding what colour the tablecloths are going to be and accessibility hasn’t come up yet, you’re WAY ahead of yourself. Access is something so important that it needs to be addressed FIRST and throughout planning any event. If you’re inviting the public, it has to be accessible to the widest possible range of people. If you know exactly who you’re inviting, it has to be accessible to all of those people (and anyone paid or volunteering to staff the event). Of course, it’s not actually illegal to hold a public meeting upstairs in a building with no lift (expect that, yes, actually it is) but it is disablist and it is most definitely Being A Dick. Don’t do it and don’t claim you have no other options because that just means you haven’t looked hard enough. Disabled people’s groups have meetings too and we find venues that aren’t upstairs-with-no-lift.

2. Expecting disabled people to ask for access


This is one thing I encounter pretty much whenever I leave my flat (everyone inside my flat is disabled and my flat is arranged to suit us). Abled society from individual abled people to small groups, to huge multinational organisations.. almost everyone and everything not created by and for disabled people has this assumption built in. The assumption that if disabled people need anything, we can and will “Just ask!” and the abled people around us will help. This is everything from shops that would definitely put the ramp out if anyone asks (and don’t understand why no one ever asks) to meetings that would definitely choose a different venue without stairs “if someone asked” to “Oh of course you can bring your carer in free, why didn’t you ask?”.
It can be as small as whether or not I can get help carrying the coffee I just bought to whether or not I consider going to a conference or enquiring about renting a house.
If your system’s accommodations for disabled people rely on individual disabled people to ask for help / access, you have already failed to be accessible and you’re being disablist no matter how good and kind your intentions are.
Systems where I have to ask for access and nondisabled people wouldn’t have to are intrinsically disablist. In common with every disabled person I know, my life is full of the question “Are the consequences of not doing this thing or doing it without the help I need to access it equally worse than the possible consequences of asking for access?” Would I rather risk spilling hot coffee over myself in public or risk being told to “stop being lazy” and forced to carry it myself? Would I rather book railway assistance 24+ hours in advance and have only a 75% chance of it actually appearing and a 75% chance of being interrogated about “what’s wrong with you then?” on either end of my train journey or just not travel outside of the city at all? Would I rather ask about wheelchair access to an event I’m considering going to and risk finding out “oh, sorry, we didn’t think about that” or just pretend to myself that I’m not that interested anyway and not ask? These are all real things that have happened to me multiple times.
Every time a disabled person asks for help, or access they have already weighed up the possible consequences of asking vs not asking. They’ve already made that calculation about a thousand times that day – and every day before it for as long as they’ve been disabled. We have, collectively, all experienced what happens when abled people tell us “No” when we want access or makes our access needs about how nice *they* are or about how sorry they are or about their curiosity about our bodies.
When we are put in the position of having to ask for access, we are forced to decide to trust you. We are all very aware that abled people as a collective have done little to earn that trust and much to break it. We can’t know if you’re different. If you’d totally give up your seat on the bus to someone who asked, we can’t see that you know. If you will personally meet us at the station to help us get to your event, we can’t know that without emailing you to ask. Which leads straight to my next point…

3. Having decent disabled access and not telling anyone

I used to live near a gym and swimming pool. It had gender-neutral, wheelchair accessible changing rooms.It had both standard and Changing Places accessible bathrooms It had a hoist for the swimming pool. It had step-free access to everything and lifts to all floors. It had personal trainers and staff all trained in disability and sports as well as LGBTQ and sports training. Do you know what it didn’t have? It didn’t have ANY of that information on it’s website. The word “disabled” wasn’t on that website. If I hadn’t lived down the road from it and if my girlfriend hadn’t joined it, I would never have even thought of entering it. As with my point above, disabled people generally don’t assume anything is going to be accessible to us. We’ve all had too many experiences of turning up to something only to find we can’t get in, can’t join in or can’t stay long because of access issues. Without clear, upfront access info that’s easy to find, we will mostly just not turn up. Even to places with great access! Even to groups that actually do want to include us. We can’t risk just assuming we’ll be okay.

4.  Claiming to be “fully accessible”

This again follows neatly from the previous point. SO MANY places and events and groups claim on their websites or flyers to be “Fully Accessible” or “Accessible”. And don’t expand on that. What on Earth do they expect us to understand by “Fully Accessible”?
Usually they are trying to mean “Wheelchair Accessible” but in my and other’s experience they often aren’t even that. If you’re stepfree once inside but there’s two steps up to the door and you’ve no accessible bathroom, you’re not wheelchair accessible and you most certainly aren’t “fully accessible”.
“Fully Accessible” doesn’t exist. It can’t exist because people’s needs can be in conflict with each other – one person might need low lighting to prevent sensory overload while another might need brighter lighting to be able to lipread for example. This is why accessibility needs to be very flexible, accommodating every possible disabled person at once isn’t possible but every disabled person should be able to access at least most of the time. Again, I know this sounds hard but disabled people manage it all the time.

If there are access needs that can’t currently be met at whatever thing you’re doing, make sure that information is available to us. Just like the gym above was failing by not telling anyone it was accessible to us, other places fail or succeed by what information they give us. Somewhere where I know I can only see half of the museum exhibits that tells me on their website what the access issues are is more accessible than another museum where I could access all the exhibits but the information isn’t easily available to me (again, real life examples).

5. Assuming you know who is and who isn’t “really” disabled

And then only offering access to those people you think are “really disabled”. This is standard almost everywhere and it’s a dick move. No matter how many official looking pieces of paper you ask for as “proof of disability£, you’re excluding real actual disabled people who haven’t got them or can’t get them. Believe me, extra time in exams doesn’t help people who don’t need it (it’s been tested). Loaned wheelchairs or seat-sticks at your tourist attraction won’t be taken up by people who won’t benefit from them. Nobody is pretending to need large print or EasyRead. No one is asking for stepfree access out of “laziness”. Believe people.
And assume that every person who asks for a seat on public transport needs it. Because every disabled person I know has a good half a dozen horror stories of the worst times they asked for a seat they needed and were ignored or belittled. You can’t look at someone and see whether or not they can stand up for the duration of their journey safely. And you can’t look at someone and see whether or not they could take the stairs instead of the lift or whether they could carry their own tray of coffee.
YOU CAN’T SEE DISABILITY.

6. Assuming everything we need is provided

*sarcastic laughter* Ahem. So, there’s a lot of things that would make my life as a disabled person much easier and more equal with my not-currently-disabled peers. Assistive tech, support workers, physiotherapy , care workers, mobility equipment etc etc. Some of these things I’ve managed to get, none of these things are free or easy to acquire – even though the UK has free health care and free social services, getting even a few things to make my life even slightly closer to equal with my peers has costan awful lot of time (mine) and money (also mine). People crowdfund their wheelchairs, Assitive and Alternative Communication devices, pain management and even treatment. Yes, here and now in the UK in 2017. Abled people seem to think we get all of this provided quickly and easily and free – we don’t.
So often “accessible” events and places are only accessible to those of us who are better off financially because they’ve built in assumptions that we have assistive stuff we can’t afford or otherwise don’t have. For example, my next point:

7. Assuming we all have an abled person with us at all times

Some but nowhere near all disabled people need another person with them all the time (I’m one of them!) but that other person isn’t necessarily a nondisabled person. In my experience, the people we tend to have around us aren’t nondisabled people who are paid to help us (see the previous point) they’re much more likely to be partners, family or friends who aren’t paid – and as least as often as not are other disabled people with a different set of strengths to our own. And of course, lots of disabled people either don’t need or don’t have another person with them at all. Yet almost everywhere I go people assume that I and other disabled people have an abled people with us. Someone to make our phone calls, to open doors, fetch our food and drink, ask for the ramp… do everything and anything I can’t do myself basically. People frequently assume that my boyfriend isn’t disabled because I clearly am disabled and he’s with me. This ignores the fact that he is actually disabled too and sometimes he’s more disabled in some situations than I am – just he can walk all the time and I can’t.

If you have a set up that requires someone to help people who can’t move around / speak / carry things and you don’t provide that help (by pre-emptively offering help, not waiting to be asked, see above) you’re not being accessible.

8. Assuming That Separate is Equal

NO IT’S NOT. I can’t believe I’m still having to say this.
If your access solution is to have a special time or day or event  or space for disabled people separate from a similar thing for “everyone” that isn’t as accessible… that’s not a solution and I can’t believe that I still have to say so.

 

My ESA is now £19 a week

You’re reading that correctly. The DWP has decided to give me just £19 a week to live off.
Yes, sure I still ge the PIP that I have been living off – but that’s money for my extra disability related expenses. It’s not for living off as I have been made to do since the end of September 2016 until this week – the end of February 2017.
So now I have £19 a week to cover my half of the groceries and the bills and my council tax and and and… So I’ll still have to live off my PIP.

I’m in the Support Group – they finally bothered to tell me (my Work Capacity Assessment was in October) – so I don’t get sanctions. So what’s happened to more than half the money I used to be paid to live from?
What did I do wrong to deserve this?

I GOT A BOYFRIEND AND WE LIVE TOGETHER.

That’s my “crime”. As far as the DWP are concerned, we are married (we’re not), his money is my money and my money is his (it’s not) and his “income” of a student loan plus mine of £19 a week is enough for two adults to live off (it’s not). But even if we were married and we did share finances and his income were enough for two, why should I be paid less when it is still just as impossible for me to work?

I’m in the Support Group. I’m not expected to look for work. I’m not expected to work. I have chronic, lifelong conditions that aren’t really expected to improve and can’t be cured. Employment Support Allowance, despite the name, is basically an income replacement for people like me who are not expected o be able to work for an income while ill – including those of us who might well be ill for the rest of our lives.
To take my only income away because my partner has money is… well I can think of a few words for what it is but I think I’ll go with “wrong”. It is morally wrong to force disabled people to rely on our partners.

IT IS MORALLY WRONG TO FORCE DISABLED PEOPLE TO RELY ON OUR PARTNERS.

My boyfriend is lovely. The DWP don’t know that. They don’t know what will happen to me once they make us so financially unequal that I have to depend on him for living costs. They don’t care: all they know is he has an “income” which is far below minimum wage – if he’d had a full time minimum wage job, we believe they’d have left me with no ESA income at all. They don’t care about making me live out of my PIP. They don’t care about whether he’d decide to spend all his money on himself and none on me and leave me to scrape by – financial abuse and other forms of domestic violence are extremely common in disabled people’s relationships. The DWP have no idea and no desire to get an idea about what this will do to me and him in particular or to disabled people across the country.

£19 doesn’t even buy an MP’s breakfast.
£19 doesn’t cover a taxi to and from the hospital.
£19 a week is my income. That’s £2.70 a day.
That couldn’t even buy me a lunch a day.

And the awful thing is, by the DWP’s own rules this is how the benefits system is supposed to work. This is not a mistake or an error. This is the UK’s “generous” benefits system in action.

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How I am: an Update 

Hello readers, 

I’ve missed you and I wonder if you have missed me. 

A lot has happened since my last post. There’s no gentle or easy way to say it but my mother died. She had been very ill for a long time and in November 2016 she died. I don’t really want to write about that but it is important to me that you all know. 

I did not know it at the time but while I and my family were trying to cope with my mother’s worsening health, her death and her funeral, the DWP had quietly stopped paying my ESA. 

In fact, they’d stopped paying my ESA in September. Without telling me. Or giving me any reason why or instructions on how to fix whatever problem they had. 

After several phone calls, we found out that we needed to fill in an ESA 3 form. That was before we realised that my payments had stopped. We weren’t told that the payments had been stopped until after we’d completed and returned the form and phoned them to ask if they’d got it. 

They said that my payments would be backpayed and paid on the 20th of December. Which was 2 days ago. 

I’m yet to be paid or even told in writing why my payments were stopped. All I did “wrong” was move house. I tried to tell the DWP in advance, sending letters to several addresses but none were received apparently. They heard from the local council that I’d moved and then stopped paying me. 

They haven’t told me the conclusion of my WCA either. 

I’m sure it will all be okay for me because I have a boyfriend who is able to phone them and chase it up until this is sorted. 

So, yeah. Dear readers, that is why I’ve been quiet of late. 

Another Work Capacity Assessment 

I’ve got a WCA this week. 

I’m flipping rapidly from panic to despair to calm and back again to panic. Because I should get the right result but the consequences of the wrong result are unthinkable. 

Astute readers will recall that I very recently had a WCA – less than a month ago. That one was cancelled ten minutes into the assessment because I have a condition that only a Doctor is allowed to assess and the assessment company had booked me in with a Nurse. The DWP or the assessment company or someone had lost so much of my information as to lose half of my conditions from my file. 

The reaction of the staff at the assessment centre suggested that this was not an unusual event. 

So now I have a work capacity assessment this week. 

Can you see me now? Bi Visibility

I’ve a lot of posts still in drafts but I have been dealing with moving house and the DWP and a lot of Real Life ™ stuff and don’t currently have home internet. 

But bi visibility is important to me. I’m bi and I’m happy with that. I’m still learning to be proud of it. 

Here are my previous posts about being bi:

I could pick a side… But I won’t 

Bi Visibility Day 

Pushing it in people’s faces 

Yes, you are “bi enough” 
Can you see me? I’m bi and I’m trying hard to be visible and not subsumed into other people’s assumptions about what I am or what I should be. 

Yes, you are “Bi Enough”

If you mostly like men but you have this one woman or nonbinary person you’re attracted to, yes you are “Bi Enough” to describe yourself as “bi” or “bisexual” but you don’t have to if you don’t want to.

If you mostly like women but there’s this one nonbinary person or man you’re attracted to,  yes you are “Bi Enough” to describe yourself as “bi” or “bisexual” but you don’t have to if you don’t want to.

If you mostly like one gender of people, but the person(s) you’re in a relationship is another gender,  yes you are “Bi Enough” to describe yourself as “bi” or “bisexual” but you don’t have to if you don’t want to.

If you’re in a long term monogamous relationship with someone of your gender and sometimes you have crushes on people of other genders,  yes you are “Bi Enough” to describe yourself as “bi” or “bisexual” but you don’t have to if you don’t want to. Same applies if your partner is a different gender to you and you crush on people of genders different to your partners’.

If you’re asexual and you are romantically attracted to more than one gender of people,  yes you are “Bi Enough” to describe yourself as “bi” but you don’t have to if you don’t want to.

If you’re only sexually attracted to one gender of people and you’re romantically attracted to more than one gender of people,  yes you are “Bi Enough” to describe yourself as “bi” or “bisexual” but you don’t have to if you don’t want to.

If you’re only romantically attracted to one gender of people and you’re sexually attracted to more than one gender of people,  yes you are “Bi Enough” to describe yourself as “bi” or “bisexual” but you don’t have to if you don’t want to.

If you’re sometimes more interested in men than other genders and sometimes more interested in women and sometimes have no gendered preferences and it changes a lot (ie if you’re like me)  yes you are “Bi Enough” to describe yourself as “bi” or “bisexual” but you don’t have to if you don’t want to.

If you’re sexually and/or romantically attracted to people of more than one gender, whether that’s “these 60 or so men and these 3 women” or “this woman and this nonbinary person in particular” or just a feeling you get when you imagine kissing imaginary people of a few different genders,  yes you are “Bi Enough” to describe yourself as “bi” or “bisexual” but you don’t have to if you don’t want to.
Inside or outside of a relationship. No matter your gender. No matter your age. Monogamous or not. Any age. First relationship or fiftieth.
If you are attracted to people who aren’t all the same gender as each other,  yes you are “Bi Enough” to describe yourself as “bi” or “bisexual” but you don’t have to if you don’t want to.

I am bisexual. Other people in my position might call themselves gay or homoflexible or queer or fluid or biromantic homosexual. Or something else! And that’d be okay if that worked better for them. Bisexual works for me.

Another Entry For My “DWP Diary”

Sometimes this blog of mine is just a diary of my interactions with the DWP. I’m even considering going back and tagging such entries “”DWP Diary” for ease of reference.

I got a letter this morning inviting me for a(nother) face-to-face assessment – or Work Capacity Assessment scheduled for three weeks from now. Already I am feeling powerless and scared. I’ve done this before and I know it’ll probably go my way but the potential consequences if it doesn’t are terrifying. If I were to somehow end up in the Work Related Activity group, the results could even be life-threatening. It’s a heck of a huge thing to have to try to keep from thinking about. I got the right award last time. I’ve only got more ill since then. I’ll be being backed up by my boyfriend and by letters showing that I got referred back into long term therapy *partly because my GP and therapist expect my mental health to plummet in response to being reassessed*. Yeah.

I suspect it will all be terrifying and awful and make me very ill… and get the right result because it’s pretty obvious what the result should be.
But nonetheless, the system is set up to put me through this torturous examination of every task I need help with and why and ask me these same questions every couple of years.. quite possibly for the rest of my life.

How can anyone think this is a good idea?