Yes, My Muslim Friends Know

I don’t get asked this very often but when I do it’s always in a whisper and with a concerned look: “Do they know you’re… y’know?”

I’ve briefly mentioned a Muslim friend of mine or my Muslim neighbours or colleagues. And I’ve been interrupted by this urgently whispered question from an invariably White acquaintance.

“Do they know? ”

Yes.

For once and for always, YES.

My Muslim friends know I’m Jewish. This has literally never been a problem. I know you mean to imply there is a problem, that I should keep this hidden away from Muslim people… And I hear that you have Islamophobic beliefs and you assume that I will to. You think Jews and Muslims should fear each other. But you whisper because you know this isn’t acceptable – maybe some part of you knows it isn’t true.

My Muslim friends know I’m Jewish.

My Muslim friends know that I’m queer.

I don’t pretend to be anyone else, not in public, not at work, not at synagogue and definitely not at home.

I am queer and Jewish and if you think that means I can’t have genuine relationships with Muslim people, that says a lot more about you than about anyone else.

OMG I Got A New Wheelchair

My quest to get a new and actually usable wheelchair from the NHS failed – they wanted to give me another big, heavy chair that I couldn’t use independently. If I’d taken that chair, I’d still be unable to go anywhere without very flat level floors – like anywhere OUTSIDE – without taking another person with me to push me over curbs and take over when my arms got tired.

But the title of this post is that I GOT A WHEELCHAIR and I have! I’ve mostly had to pay for it myself and that’s taken pretty much all of my emergency money. I just couldn’t face months of trying to convince the NHS to give me a chair I could actually use or having to take the chair they were offering and then go back when it didn’t help. Staying inside and only going out with my partner was really harming my mental health and putting unwanted pressure on our relationship. He is an excellent partner and I love him but he’s disabled too and he isn’t always well enough to push me or to go out.
So in a couple of weeks I’ll have a wheelchair.

It’s a Quickie Helium* and it weighs less than a six month old baby. I tried it out in a shop and spent over an hour in it. I’m getting some adaptions including a specialised backrest and a pressure relieving cushion because my back and hips are misaligned and my back muscles are very weak – with these adaptions I can sit up straight with my hips at the back of the chair and be fully supported to remain sitting up comfortably. This is going to make a HUGE positive difference to my life.

I’ve become mostly housebound and almost entirely restricted to one postcode. My present circumstances and current wheelchair essentially trapping me to a half mile radius around any given local bus stop.

I’ve a couple of t shirt campaigns going on Bonfire right now. One is for a tshirt that says “CYBORG” on it and the other a tshirt that says “Nobody Knows I’m A Mermaid”  and I’d like it if you went to check them out. Both T shirts are to fund other accessibility things I’ll need once I have my new wheelchair. The bulk of any money I make will be spent on a three hour one to one wheelchair skills class from Freedom Wheelchair Skills. I’ve had basic wheelchair skills training before, provided free by a local charity but that was a) in my old heavy wheelchair and b) really just the basics. I want to both learn how best to transfer existing skills to a chair half the weight and with a different centre of balance and learn new skills that I haven’t already got.

Any excess money will go towards paying for:

• A much smaller sofa so I can take my wheelchair into every room in the flat
• Wheelchair pushing wraps*
• A Wheelchair Trainer (a treadmill for wheeling)
• Spoke guards (with Captain America shields on! I already bought these)
• Underseat bag
• Wheel bag
• Wheelchair cosy*
• Wheelchair umbrella / umbrella clip
• A portable ramp
• Eventually I want LoopWheels!
• Overbed lifting pole* if I can’t get adult social care to provide one

Links marked with a * are affliate links to Complete Care Shop* – I get paid a small cut if you buy anything from them after following one of these links. It doesn’t have to be the exact product I’m linking to, if you buy anything from them via here I get money – which I’m also planning to use to buy the items I listed above!

If you know me IRL and would like to help, please ask for my Paypal or Amazon Wishlist as other ways you can help.

I hate asking for help at the best of times but right now the DWP stopped my ESA and I just had to buy a wheelchair so I am just going to have to ask for and accept help.

Unexpected Consequences

Writing is hard.

Partly because my fibromyalgia steals the physical energy to type and makes typing physically painful. Partly because the tiredness makes my brain struggle to form sentences and paragraphs.

Mainly though?
The problem is that I’m afraid of my laptop.
I associate my laptop and typing with the DWP.

It’s not even the same laptop.
It’s over a year since I’ve had to type up answers to an invasive disability benefits form.

But the association between typing, laptops and the terror and humiliation of dealing with the DWP is still there, It’s still strong.
And it keeps me away from writing.

I’m a writer and I need to be able to get past this fear – my fanfiction, original fiction, poetry and blog posts won’t write themselves. And they can’t be written on my phone – I’ve already had problems with repetitive strain injuries in my thumbs from tweeting.
And I can’t write by hand – fibromyalgia has made that all but impossible.

I don’t really have a clear conclusion or purpose to this post. I’m just upset because I can see how and why I’ve developed a panic response to using my laptop and it’s just so unfair.

Like so many others, I have a fear now of brown envelopes, of phone calls, of Job Centres… I hyperventilate if I hear the music the DWP uses as hold music on their phone line and I’ve just sat never to people calling them for me, I’ve never called them myself.
Yes this is all because I’m mentally ill and traumatised and was before the DWP became part of my life – but it’s also because they are actively hostile, abusive, callous, gaslighting and traumatising. They ruin people’s lives and health and they don’t care because they just want to deny people the money they need to live.

And that’s why I’m struggling to write. The DWP made me afraid of typing.

Anger

It’s been a while since my last post “Shame” and I wish I could say that everything is now fine. But I can’t, it’s not and my shame is still there and still hard and it’s christalising into anger.

I was brave and I asked to be referred to Wheelchair Services because my wheelchair isn’t suitable for the amount of use I need it for – it’s a day trip wheelchair not an every day wheelchair. I explained to a doctor that I’m rapidly losing the ability to use my legs – I can’t stand unaided, I can’t stand or walk for very long or very far and my legs get exhausted easily. I can’t walk to the shop – but I can wheel that distance. I can’t stand and chat with stall holders at the market but I can sit in my chair and then wheel myself to another stall. My arms still work okay – not as well as a healthy person’s arms but well enough to use to get me places. I just need a lighter, properly fitted, properly set up chair. One with the back wheels set further forwards, with no armrests, with a rigid frame and air-filled tires – a chair designed for someone who needs to use it all the time.
A chair that would allow me to leave the house without my boyfriend.

The doctor wasn’t interested in why my legs are losing apparent strength, why they fatigue so easily, why I find it so suddenly and increasingly difficult to move my legs at all. He actually literally laughed because that’s not explained by my current diagnosis at all.

Then he messed up my wheelchair referral and asked them for a powerchair to use outside only  (which they don’t provide) when I want to be assessed for an active user wheelchair for both outside and inside my house.
So now I have to be brave AGAIN and go back AGAIN to tell another doctor to write me a new referral to get what I need and I still might not get it.

I’m getting my social care reassessed at the moment too as I can’t carry on with agency carers turning up late or never and leaving halfway through calls.
I won’t write much about this process as it’s ongoing and I can’t be sure they don’t read my blog but I ended up in tears and acutely mentally ill after my last meeting with social services after having to justify needing things like “I need freshly prepared food because ready meals could literally kill me and also nobody wants to be forced to rely on ready meals” and “No I won’t let anyone into my house without seeing ID” and “I want to choose people to help me get dressed / wash / go out instead of just hoping I get sent someone compatible”.

And that’s going to eventually sort itself out and I will sooner or later have a good wheelchair that suits my needs. I have to believe it will be sorted but:

The anger.

Everything I need to live an independent and fulfilled life exists. The assistive technologies I need exist. The kind of personal assistants I need exist. Heck, the kind of adaptive housing I might need exists.

And I’m stuck at home, on the sofa in my pjs because other people, who don’t know me, who don’t have to live with the consequences, who are also trying to find the most “cost-effective” solution get to decide for me what I can have.

My body isn’t keeping me here.
My body isn’t deciding whether or not to look into the possible causes of these frightening new symptoms, the doctor is.
My body isn’t deciding whether or not I deserve to go outside when I want to, the NHS is.
My body isn’t deciding how clean and fed and safe I should be, social services is.
My body isn’t determining where I can go, what I can do – society is making that decision for me every day with every staircase and every narrow doorway and every unfilled pothole.

The tech to make my life independent exists and I only don’t have it cos I can’t afford it.

I daydream about what my life would be like if I had the things I need – a decent wheelchair, enough wheelchair skills training to be confident out and about, adapted clothing and/or devices that help to put clothes on, a walk-in shower with a seat, a profiling bed, an adapted bike, a wheelchair friendly house to live in, an assistance dog, a PA or two to help me stay organised, regular physiotherapy, regular mental health therapy, AAC apps and visual time table apps to help avoid meltdowns, headphones for outside and a sensory room to retreat to when I need to ground myself…
Even HALF of these would be a massive improvement to my quality of life and maybe I’ll eventually get most of them.
But there’s nothing I can do except continue to beg the health and social care systems for the help I need and no guarantees that I’ll ever get it.

I’m not unique. This is standard. This is how disabled people live in the UK.

Shame

I carry a lot of shame around with me. I suspect a lot of other disabled people do too.

Whenever I’ve tried to talk to someone – especially mental health professionals – about the feelings of shame, they try to dismiss them by straight away pointing out that I have nothing to be ashamed of. I need not be ashamed that I can’t wash and dress myself. It’s okay that I can’t walk. There’s no need to feel bad about being unable to use the bus alone.

And I get that and it’s not like I don’t mostly believe it. I know I’m doing the best that I can in a world built for people with minds and bodies very different from mine, a world designed to exclude me. I know.

But.

The shame is still there.
The frustration of trying to do something that would be simple and quick for (seemingly) anyone else but does not come easily for me. The self-directed upset and anger when, despite trying and despite every adaptation I can get hold of, something is still impossible. Of having to ask others to do things for me when I still feel like I ought to do them myself.

I’m losing abilities I used to have. There are hundreds of things I could do before and I now can’t. I’d sort of got used to the whole before-and-after of the huge crash I experienced five years ago but now I’m noticing the smaller crashes that have happened since. There’s things I can’t do now that I could do last year, last month, last week.
I’m scared and, yes, ashamed.
I don’t like this or want this. Some or all of my recent decline in physical and mental health might be temporary. Or some or all of it might be permanent and I ultimately have no control over which.

I don’t want to feel ashamed. I don’t want to feel scared or angry.
I can talk myself blue about how I’m doing my best, doing actually excellently under circumstances not of my own making. I can point myself toward every possible source of help and adaptation to make my little part of the world as accessible to me as possible. I can say and fully BELIEVE that what my body can and can’t accomplish with and without assistance is morally neutral, neither bad nor good… but the shame is still there and it still hurts.

I have expected for many years that I would become a wheelchair user. Wheels are an increasingly large part of my life now and yet I feel ashamed and scared when I think of asking the NHS to help me get a more suitable wheelchair. Because I feel ashamed of asking, because I feel afraid that I’m maybe not trying hard enough to stay ambulant, because I feel afraid that maybe I’m right to think I can’t keep walking much longer…

I don’t know what this post is about. I have big and scary feelings and I feel alone with them because people (including me, myself) seem to just want to talk me out of them and the feelings remain.

Today I tried to go to the shop. It’s next door to my flat. Getting dressed took over an hour. I came back without several things I meant to get. I forgot to eat any lunch. I couldn’t figure out how to put the shopping away.
I ought not be upset or ashamed about any of this. But I am.

 

Gender Recognition: Our Absolutely Non-Negotiable Terms

I know I’ve talked about Gender Recognition before. Read this by D H Kelly or any of my many previous posts on the topic to get an idea of how difficult and expensive and transphobic the current system is. There’s apparently going to be a consultation “in the Autumn” so now seems like a good time to write down our lines in the sand – those things that are absolutely necessary and not negotiable.

For any Gender Recognition system to work at all it must be:

• Available to all ages, including children.
• Available to all people, including those who are not citizens
• Free or extremely low cost
• Available for every gender and none
• Possibility of having more than one gender legally recognised as the genders of one person
• Possible to change over and over again with no limits on how many times or how often
• Based entirely on self-definition with no medical opinions, no length-of-time-you-must-be-out first and no panel with the ability to refuse to recognise someone’s gender
• Everyone who has a gender recognition application currently waiting to be seen by the Gender Recognition Panel should be approved for gender recognition right away, before the new self-definition method starts – they’ve waited long enough
• No veto power given to spouses, parents or anyone other than the individual whose gender needs to be updated
• No records kept of who updated their gender and when.
• The destruction of the current Gender Recognition Register and apologies (and compensation) to those whose information was stored in it
• Updated birth certificates available as quickly and simply as possible and at the same cost as obtaining a copy of any birth certificate
• Immediate ability to marry in the updated gender (if adults otherwise able to marry)
• Immediate ability to have updated marriage or civil partnership certificates, change from a marriage to a civil partnership or vice versa or update names and genders of parents on a child’s birth certificate
• The minimum possible number of people and pieces of paper should be involved to update a gender. Ideally, one would be able to update your own gender by writing a letter to HMRC but I would also accept a deed poll like system (see below).
• A legal assumption that a person’s gender is what they say it is regardless of what their paperwork says and paperwork only required for the tiny number of occasions when one’s gender is legally relevant

In the UK, we currently treat names very much like I wish we treated gender. Your name is whatever you say it is, you are assumed to be named whatever you say you are named, you can have more than one name and you can change it instantly and easily as often as you like. Where it is legally relevant exactly what your name is, you might need paperwork. Updating your paperwork name can be done instantly with one piece of paper and a witness or two. No courts, no fee, no solicitor required. Even changing the name of a child can be done without a court or a solicitor if everyone with parental responsibility agrees to the change. Although deed polls don’t change birth certificates, the mechanisms to change information recorded on birth certificates does exist – if your parents marry after you were born, even decades afterwards they can still re-register your birth to show them as married and change your birth name to their married name if that’s different from what your birth certificate says your name is. It’s not that the structures needed to update names and genders on birth certificates on request don’t exist – it’s really that the people behind some of the current laws on gender recognition and on marriage would really like to make it very difficult for trans people to legally exist as ourselves.

Other things I really, really want to happen but am not sure should be considered absolutely essential:

• EVERY BIRTHING PARENT be given the option to be listed as “Parent”, “Mother” or “Father” on their child’s birth certificate (currently you have to be a “Mother” if you give birth, even if you are legally male). Same for the other parent.
• Any adult of any gender(s) be legally able to marry any other non-related adult regardless of their gender(s). This would require significant changes to the Marriage (Same Sex Couples) Act which long time readers will know I advocated for *before that bill was passed*. Unfortunately, the Act doubles down on making marriage gendered and essentially created “ManWithWoman Marriage” and “Same Sex Couple Marriage” as two different, still separate institutions.
• Phasing out recording sex at birth in the first place. This would really, really solve a lot of problems for everyone and one state or another is going to have to go first. If we stopped assigning people legal genders, we’d eventually no longer need to have structures in place to update those genders. People would have genders in the same way they currently have races and religions – by ticking boxes on the census and on equality monitoring forms without anyone telling them they’re wrong if one year they start to tick a different box.
• No step between “Fill in this form” and “Get your records updated”. Currently you have to wait to receive your Gender Recognition Certificate and then use that to get a new birth certificate. That doesn’t seem at all necessary and has lead to a lot of orgs demanding (illegally) to see your GRC before they’ll update your gender records
• Give all trans people the protection of privacy that GRCs are supposed to give to just some of us. If it’s against the law to out some of us as trans, it should be for all of us with or without a piece of paper
• Honestly I wish they would fire every single person in the civil service who came up with the Spousal Veto
• Updating your gender to no longer be considered grounds for divorce (and preferably for the UK to get “no fault” divorce already) or grounds for a celebrant to refuse to marry someone

Please think about how much the current system must suck if I can put some of this stuff into “Nice to have” instead of “absolutely essential”. Some of those could easily go into “Absolutely Essential” and that’s where some other people are going to want to put them. Other people are likely going to look at my list of “Absolutely Necessary and Non-Negotiable” and think “We’re never actually going to get all of that” and will demand the much less they feel we’re actually likely to get. If you are that way inclined, please don’t. Please don’t drop trans children’s or nonbinary trans people’s needs so that binary trans adults might get ours. Please don’t settle for a system that’s LESS traumatic rather than one that’s NOT traumatic or one where fewer people get a say on your gender but you still don’t get to assert it yourself.
We might not get the sort of system I’m asking for but if we don’t AIM to get a radical, self-definition only, updates to certificates etc on demand for everyone, no fucking secret list of trans people, all genders and all ages system then we will guarantee that we don’t get one. Aim for the best not what you think you can get away with. Please.

There’s a consultation coming up. We’re not sure when yet. When it does, please, please make all of these demands as clearly as you can. Our genders are ours and the government has no right to dictate them to us.

News from YetAnotherLefty

Hello readers,

Depression is eating posts again so here’s a short round up of what I’m up to.
Firstly, for my #DWPDiary, I got my PIP award. They’ve massively underestimated how my disability affects me (and contradicted reports from my social care assessment) but they’ve awarded me Enhanced Care and Enhanced Mobility for five years so I’m not going to appeal even though I honestly believe the award should be longer . None of my incurable progressive conditions are going to get any better! But at least I won’t have to worry about my PIP for four years now.

Pride is happening where I am, yay! I went to a very local Pride and it was great. I don’t go to the big city Pride because I know it’s not going to be accessible for someone like me. And because police and corporations dominate Pride and people I know get arrested for protesting this. I started a post last year about Pride and about how I notice which businesses put Pride flags up…. and how quickly they pull them back down. Look out for that post in the next week or so (I hope).

I recently fact-checked my previous assertions on this blog that the current marriage and gender recognition laws in the UK essentially prevent many (most?) transgender people – including me – from getting married. There will be an in-depth post up soon as I unfortunately discovered that I was entirely correct. Until marriage and/or gender recognition laws are fixed in this country, I can’t get married. To anyone. Unless I submit information about my genitals and reproductive organs to a government panel and have my name permanently on a government owned list of trans people. Which.. no.

As the world seems to be slowly turning into a fascist dystopia and people argue about exactly how fascist and dangerous things should be before it’s okay to counter-protest and fight back, I would like to make my stance very,  very clear. As I’ve written before, fascists should be countered and blocked and sabotaged and isolated at every turn. They should be afraid to express their genocidal aims and they should be prevented from gathering, from preaching, from anything that might further those aims. And yes I am totally in support of punching them if it will stop them speaking or make them afraid to be fascist in public. Fascists are like baobabs, you need to deal with the problem while it’s tiny and not allow it to grow roots. I am friends with people who’ve been doing this work for years, it’s time you all caught up. You don’t have to punch anyone yourself, you don’t have to single-handedly destroy fascism or be a hero – but you can’t ignore the fascists, you can’t treat those of us who stop them as “just as bad”. Even if you can’t do anything else, please don’t condemn the people trying to save you. If all you can do is cover over their swastika graffiti, do that. If all you can do is make friends with the people the fascists want you to hate, do that. “It is not on you to complete the work, but neither are you free to desist from it” – please do something towards stopping the fascists and/or towards true freedom from oppression for all.

I feel very strongly about this. I’m Jewish and disabled and queer and trans, they are coming for me. They want a world where people like me cannot exist.
Every time hate crime levels here rise, I feel more obliged to wear my Jewishness and my queerness visibly. I feel obliged to refuse to pass for a heterosexual Christian man just because that would be safer. I insist on walking around as someone many people actively want to get rid of because doing so reminds everyone who sees me that difference is here and it is staying. It reminds me that I am different and different is not less. I will not be part of anyone’s effort to erase diversity and while I am, yes, scared to look Jewish and queer and disabled all at once, I will insist upon doing so because my differences are my strength and I refuse to be ashamed.

ATOS-ed Again

Just for my DWP diary, I will quickly note that I had another PIP Assessment two or three weeks ago. The actual appointment was far less awful than I was expecting (though whether or not the report they make from it will be remotely accurate remains to be seen) but the experience of getting to and from the building , getting around the building and sitting in the waiting room was awful.

We’d told them in advance that we needed wheelchair access and preferably a ground floor room. Whilst we did get seen in a wheelchair accessible ground floor room, the assessment centre was located really far away from any bus stops and there was no wheelchair accessible route to the building – the choices of routes where “walk on the road cos the pavement is too narrow for a wheelchair” or “Steep ramp up to another slightly less steep ramp followed by 20 metres of cobblestones and then cross the car park while cars are moving”. So, no, not wheelchair accessible at all really.
We spent over an hour in the waiting room, regularly being told it’d be another 10 minutes or so until we were seen. It was an extremely hot day – one of the hottest so far this year and it was hot inside too but no one dared to leave. One woman nearly fainted from the heat. My boyfriend eventually worked out that there was air-conditioning – they just hadn’t considered turning it on. He asked them to turn it on and they did but seriously, who expects vulnerable people to sit for hours in extreme heat and doesn’t think to use the air-con that is available?
And maybe I’m being petty here but: while I avoided the terribly uncomfortable seating by staying in my wheelchair, the seats were laid out in a pattern creating corridors between rows of seats and the pattern left no space for any wheelchair users to park. All three wheelchair users in the room had to just block of a bit of corridor at the end of a row and hope no one would need us to move. It was as if they didn’t expect us.
Another sign that they clearly didn’t expect wheelchair users was that all the internal doors had to be opened for me by two people for me to pass through. No “Press to Open” doors or large light doors with easy to open handles. Just heavy doors that I couldn’t have opened.

Like I said above, the assessment itself went much better than I’d expected – this time they didn’t ask me why I was still alive with my suicidal thoughts, didn’t ask me how I got PTSD and didn’t make me do any unnecessary physical exams (all of which happened at my first PIP assessment). But really I wish the constant assessments would stop and the fear of the next new and exciting way ATOS and the DWP can dehumanise me and threaten to impoverish me could lift.

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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