All About Trans: Avoiding Responsibility

The All About Trans project looks at creative ways to encourage greater understanding between trans* people and media professionals to support better, more sensitive representation in the UK media.

The project offers the trans* community a platform to speak out against the prejudice they may experience and promotes engagement between the wide diversity of trans* voices and the media.” – http://www.allabouttrans.org.uk/about/

Over the last two months one of the people who works with All About Trans and has a reasonable media profile has been making comedy videos where he plays a woman in an ill-fitting wig with facial hair. He has ignored criticism that it mocks trans women regardless of his intentions. When it was pointed out to All About Trans that this made him unsuitable to represent trans people they said:

I understand that All About Trans sees itself as merely a link between transgender people and media. Leaving aside that this isn’t quite true – the project has been cited by name in various media outlets and in the quote above refers to offering a platform – making connections like this is not and cannot be neutral. There is discretion and choice involved.

It doesn’t matter if All About Trans want to represent trans people or not. It doesn’t matter if we want them to represent trans people or not. The fact is, to the writers and presenters, and to the general public that see what is written and broadcast, both All About Trans and the people that they select are there representing trans people.

All About Trans puts forward a certain set of people to comment in the media. That selection is a choice they have made. When one of the people they have put forward has repeatedly made comedy based on prejudice against trans women, All About Trans have promoted a transmisogynist as representing trans people. In failing to condemn the material that hurts trans women, All About Trans have tacitly condoned it.

All About Trans cannot abdicate responsibility here. They are in a position of representing trans people regardless of whether they intended to or not, and the choices they make about who to promote matter. The actions of those representatives matter. If a person’s actions work against the group they are representing, they are no longer suitable to represent that group, and continuing to put them forward is therefore a statement about their actions. All About Trans have done good work in the past but in their response to this situation they are letting us all down.  If the people running All About Trans do not think that the comedy in question is a promoting misogyny and transmisogyny then they should say so, so that we at least know where we stand.

Appeal of PIP Consultation Judicial Review Not Successful

This morning we received the final judgment in our appeal of the judicial review of the consultation for PIP. The appeal was not successful.

The full text of the judgment is linked below but I will quote here the key paragraphs that my solicitor pointed out.

  1. Once it was accepted, as it had to be on the evidence, that the Respondent approached the 2013 consultation with an open mind, it seems to me that the challenge to the process as a whole must fail. It is explained in the evidence that all options were open as to the “Moving around criteria”, even if that meant changing the criteria for “Planning and following journeys” or looking for funding elsewhere. The reality was that consultees such as Mr Sumpter had every opportunity to present to the Respondent the difficulties that the move from a 50 metre benchmark to a 20 metre one would cause to them. It is clear that such opportunity was taken. In reality, it would have gone nowhere to contend in the consultation that the physically disabled should continue to be favoured at the expense of those who suffered other disabilities. No doubt none would have wished to present such an unattractive argument. Given the Respondent’s overall policy to make PIP available to a wider category of the disabled, new beneficiaries obviously had to come into the equation and there would have been no point in contending that they should be excluded.
  1. …As I understand the law, consultation has to be fair; it does not have to be perfect. With the benefit of hindsight, it will no doubt often be possible to show that a consultation could have been carried out rather better, but that will not necessarily mean that it was unfair. That is what the judge said at paragraph 123 of his judgment and I agree with him.

I note that the judge did draw attention to the choice that the government made to frame continuing to help physically disabled people as unfairly withholding help from people with mental and cognitive difficulties. He did not, however, find it relevant that the consultation failed to admit the government decision to give new help at the expense of help previously available. The judge implied that people responding to the consultation only needed to talk about the difficulties we would face, not about the decision to take money away for use elsewhere.

It should be noted that the government had previously said while defending this case that they know they are removing DLA from “individuals with genuine health conditions and disabilities and genuine need” and “removing or reducing that benefit may affect their daily lives.” (This is a direct quote of words used by the government and quoted in the judgment in 2014 at paragraph 80.)

[PDF] Final judgment PIP judicial review appeal

For further information please contact solicitors for this case, Irwin Mitchell.

Previously on this subject:

PIP 20 metre rule consultation back in court

PIP judicial review: Court rules against us but vindicates our case

Two weeks until PIP Judicial Review – 20 metre limit in the dock

Replacement of disability living allowance headline news for hours

Why I am suing the government

“Lots of folk can’t afford a car”

What do you do?

“What do you do?”

The question I dread. The question I cannot answer. Not without losing face, anyway.

“What do you do?”

I sit on Twitter.

That’s what I do. All day. Mostly on a tablet. On a laptop or desktop PC when I am well enough. On a phone in bed when I am not. I’m there when I wake up in the morning. I’m there at 2am. I don’t really leave. I watch the stream of tweets flow past. And believe me, when you follow more than 3,000 people they really flow.

It fills the time between hospital appointments. The endless stream brings me news, jokes, struggles, friendship. It fills my browser with tabs to read. So many that I barely have enough time to look away from the stream to read them.

It’s not like I can do much else since I became too sick to work. Mitochondrial myopathy and a whole catalogue of other problems have robbed me of my concentration, my ability to go to my office, to talk, sit, walk or stand when employment demands it. I can’t do the things that employers are willing to pay for anymore, but I can tweet. And I do. A lot.

I still crave usefulness though.

“What do you do?”

I tell people what I think will make them see me as like them. As a productive member of society. I tell them I am an activist. A welfare and disability rights campaigner. I am, too. Twitter has got me involved in campaign groups, put me in touch with people doing anything they can to get the truth in front of media and MPs. Twitter has found me radio and TV interviews and eventually lead to me being part of a Judicial Review over PIP. Through Twitter I have listened to the despair of many sick friends when they try to get the help they are supposed to get. I advise them, tell them where to find the hidden rules, how to get help to get help. Through my own trivial tweets, I am told, I help others to realise they aren’t alone, that their illness isn’t imaginary. They have done the same for me. I have made people aware of injustice, of the fights against that injustice. I have shown them protests and struggles. I have done more than I ever did when I had a nearly functional body and brain.

But all of this takes a toll. I am not well. I am very much not well. Physically and mentally I struggle through every day, and these days, Twitter is an endless bombardment of despair. For me Twitter suffers from having split purpose. It is a space to meet friends, sure, but it is also a public speaking platform. It is a news stream. Since all my friends care about the horror of the world, even when I want to withdraw from that to recover I still see what they are talking about. Twitter is a place for intimate sharing, for larger social circles, for staying aware of what is happening, and for speaking out. The biggest problem comes when a tweet meant only for one of those purposes crosses over to the others. When a minor personal gripe to a close friend becomes an international phenomenon embedded in news stories everywhere.

Over the last few years my tweets have attracted attention. Not huge by media standards but still enough that I will often get 100 retweets on something I said. I am pretty good at accidental anger that people share and amplify. If I am on a roll I can have several tweets like this on the go at once and that makes my notifications… interesting. My tweets about illness attract replies from friends, of course, but also from more distant acquaintances. They often attract unwanted advice that is irrelevant or I have already tried and discarded years before. My political tweets often receive insults or abuse from right-wing people who have come across me being retweeted. The questions, advice, insults and abuse all make me panic and retreat from Twitter. Well, that’s not quite true. I have started retreating to a private locked twitter account which just a few friends are able to see. I don’t think this is uncommon either. Quite a few people have a locked Twitter account alongside their public one, especially people who aren’t straight white cisgender men.

Admitting to having a locked account will make some of my followers sad and for that I am sorry, but this raises another aspect that I am struggling with. I have been very open about physical and mental illness and as a result I have far more people emotionally invested in me than I could ever keep track of. I feel guilty about this every day because I wish I could return the friendship shown to me. Sometimes even the friendly responses are too much for me to deal with and so I have said less about personal things on my public account and only put a few of them on my locked account instead. When I finally managed to admit and talk about my gender dysphoria I did that almost exclusively on my locked account – which is messed up in itself because I have been unashamed of physical and mental illness yet too ashamed of my gender to talk publicly.

I am not sure if there is any solution to the problems I have mentioned. I am bad at segregating my tweets between accounts and in any case I feel useless when something I said could have helped someone else but stayed hidden away. I have thought about deleting my public twitter account but that would be a waste of something that can do a lot of good. I have considered unfollowing everyone and then adding back only a few people so that I see less awfulness but that would upset many people and not address the replies that I cannot deal with.

I am not asking for advice – as should be obvious if you just read this blog post. I guess I will continue with Twitter, continue to raise my voice about the problems that I see, because that is what I do.

“What do you do?”

I shout.

I was wrong

A few months ago I very quietly announced to some of you that my gender is nonbinary and requested that people use gender-neutral they/them/their pronouns to refer to me. I also said I don’t feel like I’m a woman and I don’t intend to transition or take hormones.

Turns out I was wrong. I am a woman.

Some of you will have already guessed as much, not least from my increasing comments about gender and my social media posts about transgender issues. On the other hand, some of you definitely have not seen this coming. My gender has been a matter of intense distress, self-examination, questioning, despair and anguish – as those friends kind enough to listen to me know all too well. I didn’t know (or didn’t admit to myself) what I was before the last few months despite years of questioning, but now that I do know, the problems I faced in the past make so much more sense.

Now that I understand more about myself it is time for me to do something about it. I have asked my GP to refer me to a gender identity clinic and I am starting out on my transition.

But that’s not the important part. The important part is this:

I am transgender. My name is Ella. I am a woman.

PIP 20 metre rule consultation back in court

This time last year we took the Department of Work and Pensions to a judicial review to decide if they properly consulted about cutting help for people who can only walk a few metres.

The original consultation did not make clear the plan to cut the qualifying maximum distance from 50 metres to 20.  In quite strong language for a judge, the court noted that the consultation was  “Mind-bogglingly opaque”, “At best ambivalent”, and “Convoluted, inherently unclear, ambiguous and confusing.  No construction allows for full coherence.”

Nevertheless, the court found – very narrowly – in favour of the government and said that the second consultation, started after this judicial review was in motion, was enough to make things right.

This week we are back in court to appeal that decision. We argue that the second consultation could never have changed the decision that had already been made. The hearing will take place in the Royal Courts of Justice in London from 10:30 on the 14th and 15th of July. The judgement will follow a few days later.

It is frustrating that this case is about whether the consultation on PIP was fair rather than about the cut itself, but the courts cannot decide on government policy. As part of their defence the DWP pointed out that they are fully aware of the impact of their policy, and are removing DLA from “individuals with genuine health conditions and disabilities and genuine need” and “removing or reducing that benefit may affect their daily lives.” The DWP did do a consultation on their policy though, and that consultation wasn’t fair, so that is what we are fighting.

 

Electric Wheelchair in the back of a car
My Motability car, which I stand to lose if denied the high rate mobility component of PIP

 

Background information

As part of the Welfare Reform Act 2012 the government replaced Disability Allowance with Personal Independence Payments. Their main reason for the change was to introduce repeated frequent testing to see if claimants have miraculously healed. They also changed the maximum distance that you can walk and still qualify for help towards regaining your mobility. Under DLA the cutoff was recognised to be 50 metres. Under PIP it has been slashed to just 20 metres. This means that if someone can walk more than 20 but less than 50 metres (subject to a few caveats) then they will no longer get the highest amount for the mobility component of PIP. Assuming the person still qualifies for the lower rate of mobility, this is a cut of £35.65 per week. But worse than that, the higher rate mobility component is a gateway to all sorts of help including the right to lease a car or wheelchair through the Motability scheme. As a result of this cut more than a hundred people are losing their car every week, and many thousands more will follow when they are reassessed for PIP. Losing independent transport means losing independence and access to services.

A prominent example of this came just last month when Teenage Paralympian Kayleigh Haggo was denied the higher rate for mobility and lost her car. Kayleigh got her car back after the decision was overturned a few weeks later but this illustrates the problem that we are facing.

UPDATE
The hearing took place and seemed quite positive however the judgement will follow at a later date, probably October.

Previously on this blog:

PIP judicial review: Court rules against us but vindicates our case

Two weeks until PIP Judicial Review – 20 metre limit in the dock

Replacement of disability living allowance headline news for hours

Why I am suing the government

“Lots of folk can’t afford a car”

What you should know before pushing a wheelchair

Trabasack Wheelchair Lap Tray

Today my sister used a wheelchair for the first time. (We share the same inherited mitochondrial condition.) Her husband has little experience of pushing a wheelchair so I tried to give him some tips, which resulted in what I have written below. Believe it or not there is actually some skill involved in pushing a wheelchair and keeping the person in it comfortable. These are just observations from my own experience of being in a wheelchair pushed by someone else, but everyone is different. If you’re pushing a wheelchair for someone new then you should ask them if they have any preferences.

Karma Wheelchair

  1. Communicate. Ask if there’s anything you need to know first. NEVER touch or move a wheelchair without permission.
  2. Don’t overshoot checkouts and reception desks. If you are level, your passenger has gone too far past it.
  3. Don’t bump your passenger’s feet into people, objects or walls. Particularly in lifts.
  4. Don’t follow anyone too closely. (See previous point.) Your passenger is closer to them than you are, and seeing backsides that close gets tedious.
  5. Watch out for oddly sloping pavements, especially near dropped kerbs. The wheelchair WILL veer sideways into traffic if you are not careful.
  6. Look ahead for bumps. Dropped kerbs are often not dropped very much. Be prepared to walk a long way around via the road.
  7. Always approach bumps straight on. If you are not straight, stop and turn first.
  8. It can be easier to go backwards over bumps if the wheelchair has large wheels.
  9. Pay attention to the surface you travel over and take the smoother path. Cobbles can be painful or tiring for someone in a wheelchair.
  10. Don’t let the wheelchair run out of control. Consider taking slopes backwards so you can hold back the wheelchair. CHECK FIRST!
  11. If your passenger says stop, STOP immediately. (And, indeed, follow other instructions – see comments below.)
  12. Try going through heavy doors backwards so you can push the door with your body.
  13. Some wheelchairs have brakes operated by the passenger. Never assume that those brakes are on or off, always check.
  14. If someone speaks to you when they should speak to your passenger, tell them so.
  15. Be forgiving of your passenger. They have no control and that may make them grumpy. Wheelchair users: be aware that you might be shouting at your assistant more than you realise.
  16. If you’re pushing a wheelchair very far then you’ll probably want to get some gloves.

Thanks to @knitswift, @chmasu, @missnfranchised, @lisybabe.

Guest post: What the benefit reforms will mean to us

This is a guest post by @chmasu.

In 1992 my husband, Kevin, was working as a self-employed plumber and heating engineer. We were living in a private sector rented house with our three children aged 14, 9 and 6; and I was pregnant with our fourth child. When I was in my sixth month of pregnancy Kevin sustained a severe back injury, which left him unable to walk or stand up. After a six month wait Kevin was operated on, after which he could walk upright. However it became apparent that his back was not completely healed and it transpired that there was considerable scar tissue on the nerve, causing severe pain and limiting the distance he could walk and the amount of time he could stand. This scarring and pain was, we were told, permanent.

Following a face-to-face medical examination Kevin was awarded Disability Living Allowance (DLA), initially for a year and then, after another face-to-face medical examination by a Doctor, he was given what was then called a lifetime award. This enabled him to lease a car from Motability (I am not able to drive so our previous old banger of a car had gone). He was also awarded Incapacity Benefit, also with a face-to-face medical assessment. We claimed Housing benefit to help with the rent.

Kevin was not able to return to the plumbing work for which he was qualified so it was necessary to re-train. He studied part-time at our local F.E. College and obtained a BTEC National Diploma in Computing and Electronics. Despite his severe dyslexia he passed with distinctions in all subjects and was given the prize for best student on his course. He then obtained a Diploma of Higher Education in Computing. With these quantifications he chose to stop the Incapacity Benefit, despite it having just been renewed, and return to work part-time, eventually increasing to full time. Incapacity Benefit was replaced by Disability Working Allowance (DWA). None of the study or work would have been possible without the Motability car.

Over the years the DWA was replaced by Working Tax Credit (WTC) with a Disability premium. After 10 years working as a computer repair engineer for one of Britain’s leading small computer manufacturers he was made redundant when the company folded. There followed a year of JSA interspersed with very low-paid contract work.

Eventually he was encouraged by the Jobcentre to go self-employed. He started a computer repair business in partnership with our eldest child, who was also chronically ill, and who unfortunately became too ill to work, so Kevin continues as a sole trader, working from home. There is a steady trickle of work, but not enough to provide more than a very meagre income. It was not possible to get any finance from the bank so we put into the business all the money we could muster from the redundancy payment and a small inheritance from my parents. (Incidentally this inheritance put us just over the savings limit for Housing Benefit and they deducted an amount from our payment for two years,until we could prove that we had used up all the money.) It has taken 3 years to show a very small profit, rather than a loss. We are sustained by WTC, DLA and Housing Benefit. The computer business involves driving to customers and so is dependent on the Motability car. I have the same chronic genetic illness as my children and am not able to work, but I do not claim any benefits in my own right. We have become experts at living frugally and making economies.

The future
The Benefit changes that will be affecting us in the near future are Universal Credit to replace WTC and Housing Benefit, and PIP to replace DLA. As we now live in a housing association flat we will also be affected by the ‘Bedroom Tax’ when our student daughter leaves home.

Universal Credit will be paid monthly and will be calculated according to the claimant’s weekly reporting to the DWP of hours worked and income received. According to the government website self-employed people will be assumed to have reached a ‘minimum income floor’. This figure will be used to calculate the amount of UC awarded.

“If there are no limitations on the number of hours you can work, the minimum income floor is likely to be the equivalent of you working 35 hours per week at the National Minimum Wage for your age group.”
Universal Credit and self-employment

As Kevin does not have 35 hours of work per week, and certainly does not pay himself anywhere near the national minimum wage, his self-employment will become unviable.

Kevin will eventually be migrated from DLA to PIP. With the arbitrary reduction of the walking distance which qualifies for the higher rate mobility component from 50 metres to 20 metres it is extremely likely that Kevin will lose the Motability car. This will also render his self-employment unviable as he will not be able to drive to customers. It is my dread that he will lose the benefit altogether, which will remove the ‘passport’ to disability-related premiums and possibly the Blue Badge for parking.

It is extremely unlikely that Kevin, as a 62 year-old man with dyslexia and restricted movement, will be able to find a job

So where will this leave us? Kevin may be able to qualify for ESA, probably in the work-related group. If not, he will have to claim JSA. In either case, trips to the Jobcentre will be necessary. He has no means of getting there other than by using a wheelchair. He is not able to self-propel, so I will be pushing him there. My illness restricts my walking so the wheelchair will be fulfilling the function of a Zimmer frame – there will be pain. Work-related activity is unlikely to accommodate Kevin’s disability, which may well lead to benefit sanctions. The bedroom tax will eventually be applied. Shopping will have to be by home delivery, assuming we can still afford an internet connection. Food will become more expensive when I am not able to continue my daily forays to the reduced produce shelf in the supermarket or shop around for the cheapest deals. We will not be able to afford heating. We will not be able to go anywhere without help. Holidays, visiting our grandchild, church, any kind of excursion will be unattainable. We would no longer have a life if it were not for our close family and good friends.

This is just one story of a family affected by the Government’s austerity measures; there are many more and, as in the recent protest at the House of Commons about the removal of the Independent Living Fund, we need to make our voices heard before it is too late.

This is a guest post by @chmasu.

This is not how you should talk about disabled people

Sometimes I just have to comment on really bad reporting of disability. Today it is the turn of Ars Technica, a technology news website that I read every day. The story is about a woman who may have murdered her mother. Nevertheless, her actions don’t negate the harm done by this kind of language:

If it weren’t for daughter Gypsy Blancharde’s posts on Facebook, she would likely be seen as a missing wheelchair-bound cancer patient who survived Hurricane Katrina and who has become a victim of foul play herself.

Instead, the daughter—who can actually walk and was believed to have had leukemia and muscular dystrophy—faces murder charges alleging that she and her secret 26-year-old boyfriend, Nicholas Godejohn, killed her mother Clauddinnea “Dee Dee.”

Where do I start with this?

This woman is, in fact, someone who used a wheelchair. All the rest seems to be assumptions based on the fact that she was seen walking, that she is not “wheelchair bound”. I am also not “wheelchair bound” and frankly, that is a really offensive term. My wheelchair frees me, it enables me.

Wheelchairs are like glasses. You do not have to need them all the time to genuinely need them some of the time. Many people can walk a few metres or even further but still need to use a wheelchair for much of the time. Attitudes like that in the article are what make people call me a benefit cheat and a scrounger when I get out of my wheelchair to reach shopping on high shelves, or when I walk from car door to car boot to get my electric wheelchair out. The same applies to other mobility aids or other help with disability.

Please, stop talking about disability and disabled people in these horrible terms wrapped in stigma and judgement.

Electric wheelchair update – success!

I posted this update for contributors to my fundraiser a while back, however I thought I should put it here as well for completeness.

image

I have had the powerchair for a few weeks now and I have used it to go to hospitals, to shops, and on one 8 mile adventure to Tesco to try and stretch the batteries. Unfortunately I finished that adventure calling for help because I ran out of charge, but then the chair was able to fit in my rescuer’s car, so it ended well! Karen has used the powerchair herself a few times. She is recovering well and is now off crutches most of the time.

This powerchair has made a huge difference to me and I am really grateful to all of you who donated. Thank you so much.

Previously: Please help – I need an electric wheelchair

A Union (or whatever) of Disabled People?

Guest post by Sam Barnett-Cormack @narco_sam

Given the results of this general election, it’s more clear than ever that we need to make use of every tool outside of Parliament to stand up for ourselves. To stand up for our rights, our participation, our safety and our sanity.

It’s my feeling that a new national organisation, formally constituted and mebership-based, would be a strong way to ensure the voice of disabled people in politics, in civil society, and in the media. I have nothing against DPAC and Black Triangle, and I hope their work continues. Indeed, the organisation I envisage would hopefully work with them, along with all sorts of DPULOs, and anyone else that it makes sense to work with. The organisation I envisage would be dedicated to constructive policy work and campaigning in all areas, not just political. Inaccessible town centres, healthcare inequality, disabled people’s sports – raising the profile of all these, and more, and saying how we, disabled people, want things fixed – and having the data and policy work to back it up. And yes, that includes working to protect the social security that so many disabled people rely on, but also so much more.

We don’t have to call it a union – it wouldn’t exactly be part of the trades union movement, but I see it working in a similar way. A national executive, policy votes, meetings and similar. Of course, meetings can never be terribly accessible for many disabled people, so we’d do more absentee voting at meetings, and more things by referenda. But we would have a solidly defined constitution, and membership. So it could be called ‘union’, or ‘association’, or ‘fellowship’ – there’s arguments for and against a lot of language options. What’s important is that we do it.

I truly believe that, done right, such an organisation can carry the confidence and embody the unity of disabled people. We won’t all agree on policies, there will be internal politics, but we can see how many organisations out there make this work. We agree to follow our collective will in essentials, even while being free to disagree publicly. Not every disabled person would support it, but if we do it right, enough will. A credible, mature and accountable voice for disabled people on the national stage – with accountability, making it easy for everyone to participate, and allowing for differences of opinion without fragmenting.

I don’t have all the detail worked out, but here’s my thoughts so far. Two-stream membership, with different voting rights – self-identified disabled people as full members, and carers and allies as associate members. Our carers and allies are vital, and they must have a voice, especially carers, but the organisation must be led by disabled people ourselves. A constitution that embeds concern for intersectionality, that we will not discriminate against disabled people on the basis of other characteristics – be it race, sex, education, economic status, national origin (or even nationality), whatever. Not party-political, but admonishing all political parties (and politicians) equally, as merited. Praising that which is good and castigating that which is bad. Caring as much about supporting each other as about making noise and seeking change – providing advice and advocacy would be an excellent thing to incorporate.

Yes, an organisation doing this is going to need money. I don’t envisage employed staff any time soon, though if it takes off that’s a possibility. But organisation generally costs money, like room hire, renting a PO box, printing, and even legal advice. Some of that might come from contributions in kind, and we can always hope for a few big donors, but membership will probably need to cost money. I don’t know how much. Perhaps charge associate members more than full members, partly due to the fact that disabled people are more likely to be in poverty, and partly because that demonstrates our allies’ commitment to us as disabled people. Of course, concessional rates would be needed – carers are scarcely in a better position than disabled people, certainly. I’d love to sit down with some other people who are prepared to get this off the ground and sort out these initial details. Heck, I’m happy if other people run with the idea and I just end up a member, but I’m willing to do work to start it – I just can’t do it all.

There’s so much more that I could say: how we can directly address businesses and other organisations, not just politicians; how we can facilitate a structure of affiliate organisations to allow for local branches; how a clear forum that we have ownership of will allow us to be open about our fears and our hopes and, yes, our differences.

Let’s do this thing.