[This is a follow-on from Kaliya Franklin’s superb Guardian article]
I’m sat sitting eating my lunch, which is the 30 mins of the day that I catch up on personal emails, blog, catch up on twitter/blogs and generally have some non-science-time - it’s very much a break and also the only part of the day in which my office door is closed and phone/work email ignored until my break is over. I just read Kaliya’s Guardian article on the reality of disability and I thought I’d share some of my views since this is such a hot topic at the moment.
Like Kaliya, I have Ehlers-Danlos Syndrome (EDS). This means that our collagen (the stretchy protein that is found in nearly all our cells) is a bit different to how it “should” be - in fact, in some ways, it’s a bit better, because it’s really, really stretchy. This means we can do interesting things like stretch our skin further than other people. Collagen is also found in our joints, so they’re extra stretchy too, but this unfortunately means that whilst we can lick our elbows and put our feet behind our heads without much effort, every step we take dislocates something to some degree and we spend our time shoving joints back into place.
Though Kaliya and I have the same condition, we’re a good example of why regulations/considerations for disabled people can’t be blanket-like. Kaliya requires a wheelchair; I don’t. Kaliya’s joints dislocate every few steps that she takes; mine don’t. Kaliya is so ill that she is unable to work; I am not. I use a walking stick to get around now and started using it this year. Since I have begun to do so, things have become much easier for me. Nearly 10 years ago, when I was a student, I started to get a lot of lower back/left hip pain and the doctor at the time told me it was muscular and gave me dihydrocodeine and diclofenac and told me to keep it warm and it’d be ok in a few weeks. It didn’t improve and so I saw a rheumatologist (a medic who deals in joints and immune system disorders like arthritis and lupus) and after many scans and x-rays, they couldn’t find much wrong with the joint that was causing the pain, other than it being inflamed, though not by very much. EDS was mentioned and then forgotten and I continued to put up with the pain for several more years.
After a year of severe joint and muscular pain in my face, neck, spine and pelvis and neurological problems in my arms - all of which started after a viral infection - I eventually saw a rheumatologist again (after seeing maxilo-facial surgeons, neurologists, neurophysiologists and dermatologists) and he finally diagnosed me with having had EDS since birth. He gave me pamphlets on it and the pain disorders that I have due to EDS and sent me on my way for some more scans to try and understand which areas are causing the most problems. I’m seeing him again next week to get some answers and suggestions for what I can do to help myself.
I’ve seen Pain Management specialists too. They don’t tell you how to cope with pain or tell you to strap a pair on - they inject you full of Botox to deaden the nerves and give you prescriptions for drugs far stronger than morphine to try and give you your life back. Or at least…they used to. My primary care trust no longer funds Botox injections or about 10 other procedures for pain - apparently pain is “just pain” and we should learn to live with it. A vial of Botox costs £170 and I need it 4 times per year - apparently I’m not worth that and so instead I’m doped up with Tapentadol and Pregabalin all of the time - which probably costs about the same. Idiotic policies, as always, dreamt up by the bean counters and pen pushers who’ve never actually spoken to a patient at any stage. There is, of course, some manner of appeal process to essentially beg for funding but it takes months - they don’t seem to grasp that patients need answers fast. Pain isn’t “just pain” - people kill themselves because of it. I’ve come close myself.
Since I’ve started to walk with a stick, I no longer limp on my left leg (putting weight on that leg causes a lot of pain), which means my pelvis isn’t diagonal and my spine is no longer twisted - so I get far less spinal pain too. I’ve had a few problems of accessibility by on the whole it’s not been too bad. No one ever offers me their seat on the bus though and I had a stand-off with a pregnant woman who seemed to think she needed to sit down more than I did without even knowing why I had a stick or how far I was travelling. I sat elsewhere in the end but not before pointing out that those nice seats at the front of the bus are for “elderly and disabled” people - last time I checked, pregnancy wasn’t a disability. By all means sit there, but if a disabled or elderly person asks you to move, it’s because we genuinely need to sit down. I can stand on the bus and often do, but when I ask for a seat, it’s because I really, really need it.
This week I went Somewhere New and it was into a building that I was told had a lift, as I was going to have to go to the top floor, so I checked in advance and told them why I was asking. When I got there, it turned out the lift was broken (and had been for a while) and they were trying to fix it but it was too late for me. Thankfully, one of the staff there was very kind and held my briefcase for me so that I had a free hand to get up the narrow, steep stairs. It wasn’t too bad but the building was very old and the stairs were very steep, narrow and had wooden banisters that you couldn’t really lean on without breaking them. Normally, I can cope with stairs but that morning I was in a lot of pain and those stairs had a rise far higher than I’m used to, so it hurt. The lady who helped me was very kind and I thanked her for going out of her way to help me, but, I was disappointed that no one had bothered to tell me that the lift wasn’t working or that no one had checked, given that I had asked. There was also no attempt to try anything like moving the venue to the ground floor, it was just assumed I would be okay, even though I’d specifically made a point of phoning to ask about the lift. I don’t expect special treatment - I expect the same as everyone else - i.e. to be able to access the venue. I managed (though it was painful) but I can imagine many people would not’ve coped.
Once I got to where I was going, I had to apologise as Pregabalin makes me forget words and I stop mid-sentence like I’m about to fall asleep and have to describe the thing I’ve forgotten. I didn’t remember to mention this beforehand so I had to apologise when it happened the first time which gets me funny looks.
I got to and from on the train. Two trains, in fact, as I had to change. Kaliya had train issues in her blog post, but I cope just fine on the train and walking about. Not so good in crowds, but otherwise ok.
Both of us have the same diagnosis and both of us are of similar ages. One of us can’t walk or work; one of us can. One of us uses a stick; one of us uses a wheelchair. One of us takes lots of pain relief all the time; one of us takes it when needed.
We’re very different though we both have effectively the same diagnosis and prognosis. How can disability benefits be issued “fairly” when people with the same diagnosis can be so different? One could assess Kaliya and say “well, if Rich can go to work, so can you” but at the same time, why not say “Rich, give up your job, you need to stay at home”. Which is right? The truth is, neither. We have very, very different needs and that is what needs to be assessed. There’s no sense asking what we can’t do - it’s what we can do that matters. If I can walk to the bus stop and go to work, I don’t need mobility allowance - what would it buy me? A new stick?! I don’t need care allowance as I can care for myself - but some money for physio would be nice as the NHS doesn’t seem to want to pay for it in the form that I need.