Friday, 13 June 2014

Visibly disabled- one year on

I haven't really spoken about the more 'visible' side of my disability since shortly after I got Poppy, my mobility scooter, and as that was now a year ago, I thought I'd share some thoughts and observations.

It has been strange to identify myself as disabled and no longer shy away from it. I've lost a lot of mobility and my condition has a huge effect on my life. It is hugely debilitating and walking is a challenge, so yes, I am disabled. It's just my reality. Hearing other people describe me as disabled took a bit of getting used to, but it's just a truth.

Going down the street people often walk in a huge arc around me as though I'm either contagious or have no control over where I'm going. I'm actually quite adept at driving my scooter, I don't regularly run people over, so there is no need to give me quite so much leeway. Give me personal space, yes, but I won't lash out at you, you won't catch my disability and I'm unlikely to run your toes over, so giving me quite such a wide berth is unnecessary.

People stare. A lot. You get used to it to the extent where most of the time you barely notice it, but it's strange for people who aren't used to being with me, or haven't been with me for a while. I'm afraid the stares now come as a compulsory additional extra. Maybe I should give a pre-trip reassurance to friends that they aren't wearing something hideous and they don't have anything smeared across their faces.

Children find me, well.. Poppy, fascinating. They stare and ask questions and it embarrasses their parents. It's quite amusing to watch the familiar scene unfold. The parent normally looks horrified, looks at me to judge my reaction and then hurries off out of my earshot before replying. My favourite of these encounters went like this: Child "Why's she on one of those?", Parent "because it's fun" *smiles and winks at me*- it's nice when people can still show a sense of humour rather than freaking out about it being a sensitive topic! I'd hope that parents sometimes take the opportunity to explain a bit about disability/differences (and that they're normal and nothing to be put off by) to their kids though. I really don't mind children staring, they don't know better. I admit it hurts slightly when they stare at you as though you're from another planet the whole way down the street, head turned in the exact opposite direction to the direction of travel, but I know I look different sat on my scooter, although I would argue they look pretty strange walking looking the opposite direction too, so y'know...

The people that totally avoid eye contact are quite common. They're so conscious of not wanting to stare that the normal level of natural eye contact is lost. I understand. I've probably purposely looked the other way to not seem to be staring, but it's a strange experience when people glance at you and then abnormally quickly look away and don't look back even vaguely in your direction. I definitely prefer the can't-bare-to-look-people to the hard-core-stare-people who literally don't even look away when you look them straight in the eye and raise your eyebrows though. I had one of these when waiting for a train once- she spent at least 15 minutes staring intently at my scooter- it was seriously awkward; I tried the staring back, raising eyebrows, the polite cough to draw attention to the fact I was alive and had a face, but all to no avail- her eyes did not raise from my body and the scooter on which I was sat.

It's frustrating when people stop dead in front of me with no recognition of the fact that I can't stop dead on wheels like people on legs can. Poppy's brakes aren't great and even if I put my feet down, I can't stop instantaneously. It's a nightmare. If people don't realise I'm there, or someone stops suddenly in front of them, it's just one of those things, that's fine, it's when they're well aware I'm there and then they stop dead without warning that it bothers me. Oh and then you get the people who are so stunned by your presence that they stand directly in front of you, staring at you, which means you have to manoeuvre round them, or smile and say 'sorry, can I just squeeze past?'- their response is normally to shake their own head back to life (you know- when people shake their head erratically with their eyes closed and then open them wide- I assume it's like jump starting your car, who knows..?!) and then apologise emphatically. It's often a panicked 'I don't know where to go to get out the way- so I'll just freeze' situation, in which case the intentions are good at least!

People who talk to you as though you're stupid are probably the most frustrating. My legs might be rubbish, and yes at times my speech isn't 100% perfect and I have abstract challenges with thinking, but I'm far from stupid. Speak to me the same as you would any other intelligent human being, I didn't use my brain in part exchange to get my scooter. I have a medical condition affecting my mobility, not a learning disability. I had an eye test at the same time as my mum one time, and a lady came across and asked mum whether she needed to be in with me. I hadn't been using my scooter long so her ignorance came as a bit of a shock!

One piece of advice: speak to me about my access requirements, not whoever is with me. They might not even know what I feel capable of that day and I'm more than capable of speaking for myself! I don't like being referred to in the third person when I'm there: hearing 'Can she..' or 'Does she..' is maddening and frustrating. Assume the disabled person is capable of understanding and answering until proven otherwise, not the other way round.

People rush to be over-helpful, are over-polite and leap out my way. Don't get me wrong- I appreciate it when people open doors for me because they are there at the same time as me. I just find it a little odd when someone runs across a room and leaps to my rescue by opening a door for me as though I would never have been able to get in otherwise. I can open (most) doors. Maybe not as slickly as people on legs, but when I was at Uni I regularly got through multiple doorways unaided every day. Gasp! Wow. Well done me! This group of people are by far the most innocuous and least annoying- it's just that being helped by random strangers feels a bit odd. The most peculiar random offer from a stranger was at the train station once- I was sat on my scooter and a (drunk) man asked whether I wanted a 'lift' onto the train- how he was planning on carrying me + scooter up the steps, I don't know (particularly given his inebriated state), and how he had missed the fact I had station staff with ramps stood with me, I really don't know.. It gave me (and his equally drunk friends) a laugh though!

I end up saying sorry a lot. I apologise every time I have to ask someone to move because I'm too wide to fit past them. I apologise every time I end up in someone's way because my scooter is blocking the aisle. I say sorry every time I need to do something differently. I apologise every time my disability inconveniences others. Yet it's not my fault that I'm disabled. It's not my fault that I need my scooter and the floorspace it requires is greater than the average human. If I just rode over people's feet when they're in the way it would save me a lot of time and 'sorry's, but I'm not sure people would like it...

You realise a lot of places are still very inaccessible when you're on wheels! Some places I can't get into. Other places I can only get into because I can still walk a little and my scooter can be lifted. You realise how inaccessible a lot of places must be to full-time wheelchair users; I'm lucky in that I can get up and walk a few steps, they'd have to be carried. Also, lifts break far more than I previously realised.

Cobblestones.. Nightmare. Enough said.

People give me sympathetic, pitying looks. They have no idea what my reality is. I know people mean well, but it's totally out of context- they don't know my name or my condition, they've never spoken to me. It's just a bit weird.

I spend a lot of time online and I find some of the disability-related things I see strange. There's an image that goes around that says 'the only disability in life is a bad attitude'.. Hmm, tell that to a full-time wheelchair user facing a flight of stairs- no amount of positive thinking will get them up them. Tell that to someone bed-bound due to a severe chronic illness in intractable pain- are all the same opportunities and experiences available to them. Some aspects of disabilities can be overcome, but disabilities are disabling- that's the whole point- a positive good attitude won't change that. A lady called Stella mentions this in this fantastic talk:
Another is an image that says 'back in my day wheelchairs were for disabled people, not fat people'. Many disabled people are overweight due to medications or mobility impairment- how do you know that person isn't disabled? I feel fortunate that I'm underweight because I face far less judgement as a result, but that's wrong.
The last one I want to mention is an image of someone standing up from a wheelchair and it's branded a 'miracle', as though the wheelchair wasn't necessary. A lot of disabled people can stand and walk a little, myself included, if doesn't mean we're not severely disabled and in need of the mobility equipment!

The strangest thing is how much things changed with a small progression in my illness. When I was desperately struggling trying to get around on my failing legs, in agony and severely lacking in energy, nobody could see that I was ill.. Strangers wouldn't have dreamt of offering help, I would never be offered a seat on public transport (in fact I used to get 'the look' suggesting I should leap up to offer my seat to very able-looking people just because I was the youngest person around), people would sigh at me and push past me because I was walking slowly, people would bump into me oblivious of the fact it caused me pain- the world seemed like a harsh place. I could have done with some sympathetic smiles and a few offers of help back then, but my plight was invisible.

Before I was visibly ill, I was primarily seen as a young person. It seemed to be a label that turned people away. People don't talk to young people. Now that I'm primarily seen as a disabled person, people seem much more keen to chat to me in situations where I would have previously been ignored.

I like it when strangers get chatting to me and my disability isn't even mentioned. I like it when people compliment my scooter- I think she's pretty cool too. I love it when people offer to help, wait for a reply, and act on said reply. I like it when people talk to me and treat me like an ordinary human being. My mobility impairment is there for you to see, but just because you know my legs aren't 100% doesn't mean you know about me- talk to me, get to know me, don't judge me by my disability.

Thursday, 12 June 2014

Pain flare

My pain is flaring recently. I am in pain head-to-toe. Literally. Normally I'd leave it at that, but I decided that I'd distract myself from the pain I'm currently experiencing by describing each sensation. And then I decided I'd post it as it may be of interest to some.

My scalp is ridiculously sensitive to the extent that brushing my hair causes pain.

My facial pain has been horrible recently. It's been affecting the left hand side of my jaw and making one of my teeth hurt like hell. I've been getting sharp stabbing pains in my forehead more frequently that make me gasp in pain. I get aching across my cheeks and in my forehead as though I have sinusitis, even though my sinuses are clear.

I've got really bad rib pain. My ribs are tender and at times I get crushing pains in the centre of my chest and also stabbing pains either side, as though someone is twisting a knife wedged between my ribs.

My back keeps going into spasm causing me to freeze in absolute agony. The pain absolutely takes my breath away.

My abdominal pain is a constant battle. The pain is just so severe. I don't know what to pass off as 'normal' (for someone with IBS and CFS) or whether any of the pain is panic-worthy. I end up doubled-up in pain at times.

My shoulders keep feeling out of place and painful.

My arms feel heavy and exhausted, weak and painful. Holding my arms up against gravity causes deep, ever-increasing discomfort.

My left wrist is agony if I try to push myself up using my left hand at the moment, which is a bit of a nightmare because that leaves one wrist taking all the strain until it improves..

My hands really hurt. The muscles, the joints, the nerves.. Everything. Even typing on my phone at times is too painful for me to bare.

My hips and knees are causing me a lot of pain. It's hard to find a comfortable position to sit or lie in.

My thighs ache endlessly, as though I've run a marathon.

My feet, ankles and lower legs hurt from using the wrong muscles due to disordered walking.

It's been difficult to tolerate.

It's so challenging because I've been having to take a lot more painkillers over the last week or so, but that makes me feel worse, both because of side effects and just feeling dependent on them and unable to cope alone.

Plus, they're not working. They don't get the pain down to a bearable level. My pain is totally out of control. I need to go back to the doctors, but I'm reticent to increase doses by much or try anything stronger. I don't think I have much choice though in all honesty. I can't live with my pain as it is long-term.

Dealing with pain is both physically and emotionally draining. It's hard to tolerate and cope with. But I just have to get through hour-by-hour and day-by-day until the pain eases. Although I'm suffering tonight, yesterday was a better day, so I'm hoping I'm over the worst of this flare!

Friday, 6 June 2014

Protect Disabled Students Allowances

Friday 6th June 2014, in addition to being the 70th anniversary of D-Day, is DSA Day! DSA stands for disabled students allowances- funding for equipment and services that are absolutely vital to enable disabled students to reach their potential.

A recent announcement was made proposing huge cuts to DSAs; cuts that threaten to make studying at university far less accessible for some chronically ill/disabled students.

The support I have received through DSAs has been phenomenal. In particular, I have relied heavily on non-medical helpers. Personally I have had the help of note-takers, study support mentors and practical facilitators. My support workers meant that I was disadvantaged as little as possible by my chronic illness. As I became increasingly disabled, the amount of funding available for my support increased up to the maximum NMH allowance- I was incredibly grateful to have that support net there.

Knowing I had DSAs in place when I started Uni gave me the confidence to continue with my education despite my illness. Knowing my Disability Adviser could apply for additional funding for extra support when my condition deteriorated meant I felt able to continue studying even when my health started to decline significantly. Having the constant support of various support workers and the reassurance of my mentor meant that I felt able to cope with the demands of my course, even when I could barely walk and was increasingly unwell.

DSAs were my lifeline. I did, eventually, have to take some time out from Uni because my health deteriorated too far and I needed time to recuperate, but DSAs meant this could be delayed as long as possible and gave me time to come to terms with my illness. Without DSAs I would have no hope of returning to university in September.

In addition to my support workers, I was also supplied with a lot of very helpful equipment. A laptop with useful software has allowed me to work from home, and software enables anything on screen to be read out which really helps on fatigue-heavy days, or light-sensitive days where the screen has to be so dark that it's practically illegible. My ergonomic fully-adjustable chair, laptop stand, ergonomic keyboard and mouse mean that working for extended periods causes as little pain as possible. My laptop is lightweight and I have a lap-tray-desk-thing so that I can work from my bed as needed. My printer allows me to print things out when it is easier to read printed things rather than trying to read on screen, and means I don't have to try to get to a Uni computer when I need to print assignments etc. I have a voice recorder (and permission to use it) which means I can review lectures I struggled to understand when I feel up to it (or as revision if I'm not able to read), and can listen to missed lectures (due to illness/appointments) recorded by friends on my behalf. I doubt a lot of this would be funded under the new rules, yet it's been absolutely essential for me, and really has made the difference between me succeeding and failing.

The government say the support will still be available, it will just be the university's responsibility to fund it. This means that availability of support workers and equipment will vary between universities. Universities will have reason not to actively encourage disabled students to apply because funding their support could be very costly. Students may end up having to take the availability of support into account when choosing between universities, putting them at a disadvantage compared to healthy students.

It just doesn't make sense when the current system works. It's expensive and the government is short of money- I get it- but everyone agrees this support needs to be funded, and it makes more sense for it to be funded centrally than at a university level so that it's fair! The argument that they want students to be more independent is totally redundant- students are reliant on this support, and they need qualified people to reliably provide it. They shouldn't have to rely on the goodwill of others for them to get the education they deserve.

Cutting costs on disability support at university also just doesn't make sense financially long-term. It's possible that fewer young people with disabilities would apply for places at university due to a lack of confidence that they would receive the necessary support- this would be a huge step backwards as a society. The changes would be likely to lead to a much greater drop-out from university due to students having difficulty managing their disability/chronic illness in combination with their studies. This is likely to lead to greater dependence on benefits and a greater likelihood of future unemployment both due to a loss of confidence in their ability and support systems, and less qualifications. Disabled people have a hard enough time avoiding workplace discrimination already, without failed attempts at obtaining a university degree counting against them. Students need reliable support to allow them to progress successfully.

Please, please, please sign this petition to prevent cuts to Disabled Students Allowances: and/or contact your MP. I, along with many, many other students with disabilities/chronic illness/specific learning difficulties, am totally reliant on this funding to support me through my degree, as it pays for all my support workers and necessary equipment. As it stands, these cuts shouldn't affect me directly, but I'd hate to think this support wouldn't be available for future students!

Edited to add: I just sent an email to my MP calling on them to support the National Union of Students' campaign to save Disabled Students' Allowances and to sign Early Day Motion 48 - Changes to Disabled Students' Allowances.

It only took a minute or two using a model letter - please take the time to do the same.

All you have to do is visit and put in your postcode - easy as that.