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.

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

We lost. The judge ruled that in the end the consultation process for PIP was not unfair.

However that is not the whole story. You see, the judge found that it was the second consultation that made things right. The first consultation, he had some harsher words for. Words such as:

“Unfortunately mind-bogglingly opaque.” (Paragraph 105 part ii)
“At best ambivalent” (Paragraph 105 part vii)
“Convoluted, inherently unclear, ambiguous and confusing.  No construction allows for full coherence.” (Paragraph 106)

Not exactly a ringing endorsement of the way the government chose to do things, I think you’ll agree.  The government’s legal team also agreed, and in fact they have accepted that they must share a portion of the costs of this judicial review in the face of evidence that it was indeed justified.

Not only that, but the government made it perfectly clear that they know exactly how much their policies will hurt people but want to do it anyway.

“… [T]his was recognised from the outset.  In developing the PIP assessment we were aware that the vast majority of recipients of DLA were individuals with genuine health conditions and disabilities and genuine need, and that removing or reducing that benefit may affect their daily lives.  However, we believe that these impacts can be justified as being a logical result of distributing limited resources in a different and more sustainable way…”.
(Paragraph 80)

Let’s see that again:

we were aware that the vast majority of recipients of DLA were individuals with genuine health conditions and disabilities and genuine need, and that removing or reducing that benefit may affect their daily lives.”

And again:

“genuine need”

So we have the government’s lawyers arguing that the DWP and the government ministers know full well that they are removing vital support from hundreds of thousands of people who have few other options and who will suffer as a result. And they are doing it to save money.

The judge agreed with the DWP that taking money from physically disabled people to allocate to other PIP claimants achieves “substantive equality between physically and non-physically disabled.” I argue that this has reduced the equality of physically disabled people compared to not-yet-disabled people, purely because of budget.

This is Lowest common denominator equality.

This is your government. This is what the society that we live in is prepared to accept.

The court’s findings and what’s next

The judge was persuaded by Dr Bolton’s evidence that the government could have changed their decision had they decided to listen to the overwhelming opposition to the 20m rule in the second consultation, and so it was not unfair. My legal team and I disagree. We still argue that the decision had long since been made and that the secretary of state had a closed mind by this point, and so the second consultation was not at a formative stage.

Although the judgment went against us I feel that the judge’s analysis of the first consultation is vindication for our bringing this case to court. Don’t forget that the second consultation only came about after this case was given permission to proceed and the DWP realised that they could not get away with such a shambles.

I hope that the admission by the government that they know exactly what they are doing will make people wake up to what is happening. Meanwhile, this is not the end. The legal team and I are considering our options to appeal this result.

Press Release from Public Law Solicitors

PIP Consultation Judicial Review Press Release

Read the full judgment

PIP consultation judicial review starts today

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

The continuing saga of my electric wheelchair

I have to use a wheelchair for most journeys outside of my home and car. Because I do not need one inside the home I do not qualify for any help at all from Worcestershire Wheelchair Services even though an NHS occupational therapist has agreed that I need it, and I get High Rate Mobility Allowance and a Blue Badge for parking because of my inability to walk. I use my DLA to lease a Motability car and I bought my own manual wheelchair which I can only self-propel about as far as I can walk.
My current power wheelchair
My current power wheelchair
I would benefit greatly from an electric wheelchair because at the moment I require someone to push my wheelchair. With an electric wheelchair I would be able to visit places without my wife. My wife intends to go back to work and I won’t be able to go anywhere without her that requires walking more than few metres from my car. Even the medical appointments will be difficult.
After all the drama detailed in previous blog posts herehere and here I applied to a local charity that provides grants for people in and around the area including helping with mobility. They aren’t a disability charity and so they don’t have a great understanding of my problems. They seem convinced that because they have purchased mobility scooters for several people with my illness, that I should be able to get buy with a scooter too instead of an expensive electric wheelchair. My correspondence with them has dragged on for months since I first applied. When I first looked at a suitable chair to obtain a quote I asked about a second controller which would enable an attendant to operate the chair if I were too exhausted to. (This can happen after a long day.) The charity administrator immediately panicked on seeing this in the quote and demanded that I get my doctor to write a letter saying that I could safely operate a power wheelchair. This despite the fact that I drive a car! I had the second controller removed from the quote anyway when I realised that it cost about £500 extra but they still insisted. Obtaining that letter took three months, after which I was sent another letter which I detail here.
Dear Mr Sumpter
Further to your application for an electric wheelchair, we have now received confirmation from your Doctor that you are suffering from ME and would benefit from a mobility vehicle.
However the electric wheelchair you have requested has been quoted by INDY at £2410.22 [This is the price with 2nd controller] which is greatly above what trustees would normally consider for someone with your health grounds. In similar circumstances they have purchased a Aerolite Scooter in the region of £800 which easily fits into the boot of a car.
In order for Trustees to consider your request we would ask that you obtain a report from an independent Occupational Therapist as to why such a specialist chair is necessary for your condition.
I did contact my NHS Occupational Therapist but she declined to provide such a report. I have no idea where to go to pay for a report or if that is suitable so this is where it has stopped for the last two months. I have already considered and tested mobility scooters. They are unsuitable for several reasons:
  1. My size 12 feet do not fit within the footplate of the more affordable smaller scooters and instead sit awkwardly across different levels of the scooter.
  2. The seats on all the scooters that I have tried do not give enough support to my back, leading to pain.
  3. Stretching my arms out to the handlebars puts pressure on my wrists leading to increased pain, and using the arm rests causes me to slouch forward, hurting my back again.
  4. I would have to leave it outside some shops, which is no good as I cannot stand and walk for long enough to queue or browse the shelves for what I need.
  5. I cannot take a scooter on a bus. They’re not allowed.
Squeezing onto a mobility scooter
Squeezing onto a mobility scooter
A larger scooter would solve part of this problem including footspace and seat height, but would cost more and still hurt my arms and hands. The one I tried was also too heavy for me to lift into my car and possibly too big to fit. A proper electric wheelchair would have a good seat, proper arm support, a controller suitable for the level of pain in my hands, enough space for my feet, would be allowed in shops and other places, and could go on buses.
Since my application I have actually bought a second hand electric wheelchair for £300 but while useful on occasion it is far too bulky to go in my car and the batteries are nearly worn out and will soon require expensive replacements. If this local charity insist they will only pay for a scooter then there really is no point in my getting one. I’ll have to use my current chair until it dies for journeys on public transport and will have to have someone with me to push when I go out in my car. I’ll be writing to the charity with all of my reasons and I will also suggest to them that they purchase a slightly cheaper electric wheelchair, although finding one that is both cheap and reliable will prove tricky.

Legs, wheels and money

My old broken power wheelchair
My old broken powerchair

My electric wheelchair broke a couple of weeks ago after going up a too-steep ramp into a train, toppling backwards and then falling forwards fairly hard. That was quite inconvenient, especially when I discovered that the motors and brakes have burnt out and it will cost about a thousand pounds to fix. Since then I have had to fall back on a manual wheelchair, pushed by my wife. I can move my own wheelchair, just about, but it is still painful and exhausting for me. Fortunately I have just got a new car, so I can drive to most places and then use the wheelchair on arrival. Unfortunately, the manual wheelchair that I was given by family doesn’t fold up enough to fit in the back of my car.

I will qualify for a wheelchair from the NHS, and so I have asked to be referred to the local Wheelchair Services for an assessment. I am slightly stuck though. Walking and standing around result in high levels of pain and fatigue for me, as well as leaving me in danger of losing my balance and falling over. Despite this, I can walk around at home most of the time with only an occasional fall. NHS rules say that I can have a manual wheelchair for use outside, but because I can walk around at home I will not qualify for a powerchair even though I can’t propel myself most of the time. In fact, I probably won’t even get a self-propelled wheelchair since moving it myself can cause some pain and fatigue too, so I will end up with an attendant wheelchair, requiring someone to push me with no option to move myself at all. (See page 16 and 17 of this document for the full rules.)

Because a referral to the wheelchair service will quite likely take a few months, (I won’t be a high priority) and because I will probably get an attendant wheelchair rather than a self-propelled one, I bought a new wheelchair yesterday – a shiny new Karma Wren 2 self propel. The chair cost me £279 from a local shop called Indy Mobility. I could have found it slightly cheaper online but the staff at Indy Mobility were very helpful and put up with me for a couple of hours while I looked at all the options. They also didn’t charge me for the work done so far on my broken powerchair.

Karma Wren 2 wheelchair
My shiny new wheelchair

I was surprised how much easier the new chair is to self-propel than both my old one (and it is old!) and my dad’s one which I borrowed when my power chair broke down. That is partly because the new chair is made from lightweight aluminium but I think also due to it not being worn out. It is light enough that I can lift it into my car myself as long as I am not too tired at the time. It fits nicely in the boot of my car, as you can see in the picture below.

My new wheelchair in the back of my car
My new wheelchair in the back of my car

Wheelchairs are one of those extra expenses that disabled people can have which Disability Living Allowance is supposed to help pay for. While chairs are available from the NHS, it is quite common for them to be inadequate or to take a long time to get, even apart from cases like mine where I won’t qualify for a power chair which would help me the most. The Motability scheme which leases cars to disabled people in return for the mobility allowance from their DLA can also lease high-end powerchairs to them but I can’t do that because I already spend my DLA on a Motability car so I have had to buy my wheelchair with a credit card at very high interest. I think there are quite a few people stuck in this situation including Kaliya (@BendyGirl) who is currently trying to raise funds for a powerchair of her own. She really needs one to get around outside – just see her “deathwalk” video if you need convincing. Kaliya could use a powerchair inside as well, except that her flat does not have enough room for one. You can donate to Kaliya’s powerchair fund by sending money with Paypal to wheelchairforkali@carolineengland.co.uk or visit her blog post about it.

Karma Traveller 2 powerchair
Karma Traveller 2 powerchair

I have a possibility of getting part of the cost of an powerchair paid for by a local charity – the same one which gave me a small grant when I went to university and gave us food money last year when our benefits were screwed up. They require me to have attempted to get one from the NHS first, and so I must wait until I have been assessed before I can do that. I am hoping to take a voucher towards the cost of a wheelchair rather than a wheelchair itself from the NHS so that I can then put that voucher together with a charity grant if I can get one and buy a powerchair. I plan on getting one that is small and light and can come apart to go in my car – my old one weighed 90kg and even healthy people struggled to lift it. Indy Mobility suggested a Karma Traveller 2 which I think costs about £1,700, although I will have to find out what else is available. For now I will just have to rely on my wife to push me.