I knew my wheelchair was falling to bits!

Two posts in one day? I must be on a roll! Said roll came to a scary stop earlier when I lost a nut from one of my wheelchair’s front wheels! I was volunteering for RNIB again today, and got into the department just fine; in fact, I got out of the department just fine as well, but when I turned to go toward the bus stop, I noticed my chair was tipping quite dramatically. Thinking I’d run over a stone that was caught in the wheel, I leaned over and nearly fell out, as the front wheel on that side was hanging off. I called my mum, saying I didn’t know if I’d get home, as I was in the next town and my bus was imminent; luckily, my colleague helped me out–or tried, as between us I had my sticks, she had her guide dog, so pushing a chair on top of that wasn’t really working! I ended up using it like a Zimmer frame to get to the bus. Mum was picking me up at the other end anyway, so I didn’t have to use the chair again. I know I’m very lucky I could get up and walk to the bus, otherwise I’d have been somewhat stranded! I don’t actually know where I lost the nut; we think it was possibly when my sister and I hit a pothole recently. My dad has a garage in the garden where he does a lot of mechanic work, so we’re sure he has a nut to fit. I’m absolutely fine; it was just quite a big fright! I’m glad it happened as I slowed to turn a corner and I leaned down to investigate. I don’t want to know what might have happened had I been going down a hill or something! (At least I was outside a hospital, haha.)

This week has actually been quite busy for me, which is good! My mood’s been a bit all over the place, and to be perfectly honest, as I tweeted recently, (CN: self-harm)I probably would have relapsed with harming by now if I had more physical ability to clean up the mess of it. Lupus is good for something! Not being able to clean isn’t going to delay it indefinitely, but I’m thankful I’m still at that wibbly-wobbly stage. I feel much better today again, so I think I’ll still be swinging around a lot before it comes to a full-blown relapse, if it does. (end CN: self-harm) So, I’m quite happy to be keeping busy and getting out to keep my mood up just now.

I still have more to go this week. I have a voucher for a restaurant which expires tomorrow, so it looks like my sister and I are going out for food tomorrow! Only if I can manage though, because I do need to keep spoons for Saturday as I’m taking my niece and her sister to our local library for some activities that are on. While it’s nice to be busy, it’s very exhausting. The sooner I get motorized, the easier it will be, at least!

Independent advocacy visit

After mentioning my DLA (disability living allowance) appeal on Twitter, which I had about this time last year and was unsuccessful, a friend very kindly found out for me about the independent advocacy organization in my town. I wrote them an email which was effectively a self-referral, and yesterday I had an appointment to see one of the advocates.

I had an advocate from the local council at my appeal, but to be perfectly honest, I felt that she was fairly useless. I was very overwhelmed by the whole thing, especially when the panel made very dismissive comments about me, but she neither spoke up nor asked me if I had anything to say but was too nervous to speak up. Anyway, I’ll write about all that stuff at another point, as I do plan to write a post about my experience with benefits (DLA/PIP and ESA). So, as I may well end up going to appeal again this time round, I thought it couldn’t hurt to talk to this organization.

The woman was really nice! Although there isn’t really anything they can do at the moment, we had quite a long chat about my situation anyway. I explained that I had written to PIP months ago, yet they haven’t replied yet, so I called them; the woman who took my call said the benefits people would be in touch within 48 hours, but that was nearly three weeks ago now and still nada. I told her that I have some issues with the phone, so it took me a while to gain the courage to call them in the first place, and then I spent that day quite anxious of when they were going to call me back; at least when I make the call, I can decide when to do it. And it was for nothing, because of course they didn’t phone.

Basically she is going to close my file for the moment, until I get a date for the PIP assessment, which, truth be told, could be next year. I’m going to chase this up on the phone or get my sister to do it for me; this is just to get a copy of the application form! Then, as I did with my ESA form, I’ll talk to Citizens’ Advice who will help fill it in and then I’ll reconnect with the advocate to prepare for the assessment.

I ended up yapping away for so long, and apologized quite a few times for it! She didn’t mind though, saying I was very interesting and that she could have listened to me for hours! I talked about my long road to the lupus diagnosis, some things about my mental illness, and about my possible Asperger’s (self-diagnosed while various doctors and my psychologist agree but don’t necessarily want to “pathologize” it by going down the diagnosis route…) seeing as I was very much talking far too much, so it was a bit relevant there! She began to say “This might be cheeky but…” and I thought, “Oh, God, what crap is she going to come out with?” as though it was going to be something problematic about disability from a non-disabled person. Actually, she explained she has a course going in May where she trains new advocates, and she would like me to come to speak to them to give them a first-hand experience of living with disabilities and some of the problems that people will run into, like public transport access. I was quite flattered! I agreed, and so we will reconnect around April to get it going. I’m not really used to making such an impression on someone in a first meeting, and if I can help new advocates see a point of view they hadn’t considered, that’s great. As I said to the advocate, and she fully agreed with me, even with the best intentions and working in the field of disability advocacy, these people still don’t have a first-hand experience of disability! When I was in there talking about access in some fashion, she stopped and said she hadn’t considered that. (I think it was talking about when even a “low” drop kerb is not flat enough for me to get up on my own in the manual wheelchair, then I’m stuck on a road.)

I’m pretty happy and I’ll be glad to have her help in the assessment and/or appeal, even though they can’t actually add anything themselves; their job is basically to make sure I’m picking everything up, understand what’s going on, that I have said all I want to say, etc. As well, it’s the support aspect of having someone by your side. Medical assessments can be very daunting, and the appeal process definitely is. Knowing that someone is there with you doesn’t make you feel so small on the other side of the panel.

Conventional success – an unrealistic expectation for many disabled people

Well, friends, I’ve just had an encounter on Twitter with someone spouting some very awful ableist things, leading me to write a lot of thoughts on my personal Twitter page. I thought it might be a good idea to basically get these thoughts out on here too. It will probably end up a fairly disjointed post about ableism, abled people’s expectations of disabled people, and the justification of internet activism and defense of its critics.

Basically, the person in question claimed in less polite words that disabled people who don’t achieve success have simply given up on it. The only difference between those who do and those who don’t is willpower, I was told. Two words = Helen Keller. Apparently because Helen Keller overcame her obstacles, I was told, none of the rest of us really have an excuse. The person did not heed that fact that not everyone has the same disabilities as Helen, never mind the resources. It’s a given fact that rich disabled people usually manage to reach more conventional success than the rest of us, because they have money for aids and resources that we don’t. (Case in point, I would have fewer problems with my upcoming Masters, mainly because I could have bought a motorized wheelchair a long time ago and moved to a city that offered different courses part-time.)

This person did not heed the fact that failing to find the strength to continue life seeking our pleasures is most often a symptom of mental illness, not laziness. Along with Helen Keller, they used themselves as the holy grail of “disabled people who achieved success”, implying that because some can, the rest of us are simply making excuses for ourselves. We’re often called pessimistic or defeatist for accepting that particular activities or paths are beyond our limits, while it’s actually more harmful for people to cling to the idea that they can do *anything* with willpower and injure themselves, mentally and physically, by pursuing something because society will not allow us to step back and say “No, I can’t.”

Recognizing our personal limits and acting upon them to say “I can’t” is not the same thing as just giving up on everything. In fact, we disabled people often can only get through a normal day with sheer willpower and stubbornness. No, it’s not a miracle that a disabled person left the house–we’re not here for inspiration porn–but it’s a fact that many of us have to put so much more into the little daily things that people take for granted. And for those of us suffering from mental illness, sometimes just literally surviving the day is a success.

But abled people have a very one-sided idea of success, going somewhere along the lines of being functionally independent, making lots of money and having a conventional job. For many disabled people, this is not an accessible path. Often if we do manage to get a conventional job, we cannot work full-time, need plenty of accommodations, and such things. Many of us are always going to need a family member, partner, or friend around to help us out with some things. According to society, these “dependencies” are the result of us not working hard enough for our full independence. I don’t understand why we are not “allowed” to seek help; of course we want as much independence as we can, but independence should not involve stubbornly refusing help for things and making ourselves worse because we feel like we must do every little thing for ourselves or we’re failures.

One thing the person literally said was that we’re at fault because every moment we spend tackling ableism online is not spent applying for jobs instead. Wowee. There are a few points in here that are implied to me: 1. that disabled people are not allowed to have “free time” and hobbies; every moment we’re awake we must be *bettering ourselves*, 2. that internet activism is unimportant, futile, and not a measure of success. I don’t know about you guys, but challenging ableism and changing the views and behaviors of people toward oppressive groups is success in my book!

Sometimes, when engaging with ableists, I do get anxious and/or bitter. It’s often the time I simply block them for the sake of my mental health and no longer engage. But, like today, much of the time I’m perfectly calm and civil. Of course the person I’m engaging usually decides I’m the stereotype of an angry crip and uses my apparent anger at my oppression to dismiss everything I’m saying. While this is problematic even if the oppressed defender *is* angry (we are justified to be angry at our systematic oppression after all!), it also demonstrates the infantilization disabled people go through where, if we say anything with passion or emotion, we’re written off as children taking tantrums. Any mention of our disabilities or the obstacles we face, and we’re told we’re “wallowing in self-pity” and that a negative attitude isn’t going to solve anything. Aside from the fact that we’re justified to have days where we do feel sad and bitter about our experiences, it shows that disability is viewed inherently as something that should never be mentioned. If you do, you’re complaining and whining about your experiences. Those of us who are very open and vocal about our disabilities are often regarded as spending our every moment wallowing in our “misfortune” instead of just shutting up about it and getting on with life.

People often believe that any level of engagement with something can be transferred to the equivalent hours in a job, for example, if someone spends some days a week volunteering, undertaking a hobby, or, indeed, writing a blog about disability or combatting ableism online, then “why can’t you spend that same time doing a job instead?” I don’t think I need to go into too much detail about how oversimplified this is. Volunteering brings so many accommodations that are difficult to find in a paid job, such as extended breaks during the workday, extended periods off, deputizing duties to colleagues, working a very low number of hours a week. Re hobbies, we can spend a very long time producing something that may not seem like much at all to an abled worker. I crochet when I’m able. If my job were crocheting (just as an example, haha), I doubt my employer would be satisfied enough with my rate of output to keep me in the job. We often wake up in the morning with no idea whether we can make it in or not. The companies I volunteer for know this, and I don’t need to panic every time I can’t make it that I’ve let everyone down because they don’t have anyone else to do my job. I have extended periods of time where making it in is the rare exception, rather than not making it in. How many employers would pay me for a few hours a week to take long breaks, not do tasks I can’t manage, and when I’m not even able to turn up half the time? Of course I’m trying to find a position that works for me, but it’s a very simplified view of things.

Re online activism: people don’t realize that this is what many of us do in our spare time, alongside rather than “instead of” working, for one. So to suggest that we are wasting our time doing this when we should be working just reinforces the “disabled people aren’t allowed free time” idea. The other massive issue with it is people suggesting it’s ineffective and futile to even try. Ironic, isn’t it, that the same people who call us defeatist for identifying and living within our limits will say “Don’t bother fighting ableism; it’ll always exist, so you’re wasting your time”. Well, out of magically curing my disability and making the world less ableist, I know which one I actually have a chance to achieve. As I said on my Twitter, “No amount of willpower is going to make me able to walk, grow money out of nowhere, and balance my brain’s chemicals.”

In a nutshell, just because what a disabled person is doing with their life doesn’t fit conventional success, that doesn’t make it meaningless or mean that we’re just not trying. It means that “success” isn’t a monolith, and that different people with different obstacles have different goals in their lives. You don’t know how much or how little they’re trying, and you certainly don’t know how much meaning their lives have.

When will my new 2015 life finally arrive?

(TW: self-harm detail)
Oh, readers. I’ve been a bit all over the place still. I can barely remember what I’ve mentioned here and what I haven’t. Thankfully most of my wounds have healed nicely and there are only a few bad ones–actually, the problem with me healing nicely is that I become very disappointed. I get a perverse sense of satisfaction and achievement out of more serious wounds and the scars they leave; then it means later I swing wildly between hating my scars and wishing they were gone and no one would see them to me being disappointed they’re not as bad as they could be… I still don’t know where I am with it all. The last time was quite bad and had me on my hands and knees cleaning blood in the middle of the night in the middle of a lupus flare. I get very dissociated when the harming gets that bad, and so my personal Twitter account is full of fairly incoherent tweets about it. It’s very odd to look back over it when I’m later lucid and see just how “out of it” I was. It was a good thing about my Livejournal account too that I could look back and keep track, although I get very ashamed for writing such things in such states where people can see. But I guess that’s why I have the blog, for the catharsis.
(End TW: self-harm)

So, yes, this is my first proper post of the year. The title is pretty facetious; I’m not one of those people who seem to believe that somehow the change of an arbitrary calendar system is going to sort out my problems, but part of me does find motivation in there to kick myself up the butt and sort stuff out. But juggling physical and mental illnesses together makes it a million times more difficult. Often I seem to find I have the mental motivation but can’t manage physically, or less often the physical energy but no mental motivation. And often I have neither. What ends up happening is that I let my impulses take over and then do something very taxing such as tidy up the room and then have to pay for it for days after. But sometimes something snaps in me and I just have to get something like that done. Once I rearranged the furniture in my room and ohhh, was I in pain for a very long time after that.

Very conscious of appearing hypochondriac, I wonder if there’s an element of hypomania to my depression. It’s often hard for me to tell what’s a welcome reprieve from depression and a “good day/week/etc.” or something more. I know with the Asperger’s, I can tend to very much focus on tasks and find myself going “overboard” with tasks, accomplishing things very quickly without mental fatigue, but when it’s also accompanied by only needing 3 or 4 hours of sleep (when I’m often in bed for 12+), I do wonder. But to be honest, I think this is probably just me having a good day?

And to continue the hypochondria theme… Lupus has been taking a relatively minor pop at my kidneys for a while now. The rheumatologist is keeping an eye on things for now. The levels of protein in my urine have been somewhat on the border of concern, but nothing too dramatic just now that we’ve found. But I’ve been having so much trouble over the last months with urinating; usually I feel a very strong urge to go but when I try nothing comes for a long time. It’s like I can feel the urine edging very slowly through me until it finally reaches the outside world. Often as well I find I can only push for short bursts instead of a steady stream. Anyway, the point of this preamble was that I was reading about azotemia (nitrogenous waste products building up in the blood due to kidney malfunction) and saw something about asterixia. Now I wonder greatly if this is what’s up with my wrists! It’s called a “flapping tremor” and happens when you extend the wrists back. I’ll have to take a video of mine to see what people think. Unfortunately I missed my rheumy appointment last month (I thought it was in January!) so I won’t see her now until May. 😦 I think I’ll probably see the GP in the meantime and get my bloods updated. I’m not too worried about any of it, to be honest. My twin sister knows that renal involvement is fairly common in lupus patients and she’s preparing herself to give me a kidney in case mine fail! (Jumping the gun a bit, haha. I can’t focus on these prognoses myself; I’ll cross those bridges if I come to them. But she’s understandably worried when reading about the prognosis and stats, and she’s quite shocked at how striking the tremor in my wrists is. So if anything I’ll get the bloods updated for her sake as well as, you know, being proactive in my own health…!)

Actually, I tend to be somewhat cavalier about my health. I am notorious for downplaying things and keeping quiet about things, which was part of my motivation for getting a space where I can actually talk about these things! But after it took me so many years to get the lupus diagnosis and being fobbed off by so many doctors has made me feel paranoid about my own concerns. It’s hard for me to find that balance of feeling validated by my concerns about my own body, especially considering every time I’ve approached my doctors with a specific concern, I’ve been right. But this is what insensitive doctors over the years can do to you, I guess.

Unfortunately it’s getting even harder for me to get out the house and do things. With my shoulder getting even worse, often neither sticks nor self-propelling the manual chair is an option for me. Thankfully I mostly have a family member to help as I’m rarely out more than once or twice a week, but for my volunteering which I commute to the next city for, it’s very difficult as I’m on my own. I keep saying how much easier it would be if only my lower half were affected and I could simply bulk up my arms and propel away! I’m so grateful I’ve reached about £600 in my fundraiser though; also, Nina, whom I work with, has offered to give me whatever money she gets back from her company expenses, which has absolutely floored me with her generosity. Lucy, the assistant manager of one of my charity shops, has offered to bake cakes, as I’m hoping to get up some wee local things. If I don’t have the money by September when uni starts, I don’t know what I’ll do. But again, I’ll cross that bridge if/when it comes.

I have a list of posts to write for this blog, and come Sunday, I’m going to start my little weekly goals again, even if it’s only three. It’s not so important to me whether I actually get them all done or not, but it’s good for a general motivator. Happily, my sister and mum did a massive tidy up of the bedroom my twin and I share; I’m so grateful. This means that next month when my sister has time off work, we can work on organizing our things. We don’t have too many things each, but two adults in one bedroom is not exactly convenient for space! I would certainly like to get my desk space set up again and have a place to work on painting. Right now, I’m off to work on Spanish translation, so at least that’s productive! (Also, I’m strongly fighting the temptation to add new languages to my studies, although I already have 11. :/)

Happy birthday to me!

My followers might be glad to hear that one of my New Year’s Resolutions is to actually post here more frequently! I keep thinking something in my head is not worthy of a blog post, and then end up writing so much on Twitter, which can come out quite clumsy! But I need to remind myself that there isn’t really such a thing as a post that’s too small. 🙂

I have a few ideas for posts, but just now I just want to make a general update, as usual. Unfortunately, I think I’m on the brink of a lupus flare; certainly things have been particularly bad over the last few days, I’ve been more or less bed-bound and I’ve been out of the house only once since Christmas Eve, which was to go food shopping when I should have been in bed! As my chronically ill fellows will know, it’s not always the easiest thing to have regular showers and keep on top of hygiene when you’re feeling rough, and last night I’d been in the same pajamas since Christmas Eve. I did bring new pajamas down to use my last spoons for an overdue shower, but chose to go food shopping instead, because if this does turn out to be a full-on flare, I won’t be able to do either! As I Tweeted, I was dirty but at least I had food! Choices like this are a frequent thing for lupies or anyone with chronic illness, really. We have to pick and choose what we can manage, and often I have to “sacrifice” body parts for the sake of others, e.g. injuring my shoulder more using the manual wheelchair to give my poor hips a break. I’m quite envious of those lupies who get remission periods, but unfortunately I’m not one of them!

I’m still volunteering in the charity shops, but it’s getting difficult. I often think “It’ll be fine; you can sit down at the till all day”, forgetting just how strenuous it is to fold and pack people’s purchases. The staff are absolutely fantastic and give me as many breaks as I need, but still. It’s also tough with Sjögren’s syndrome to interact with customers all day. I’m tired of gum, but water on its own isn’t enough! In the New Year, I’m taking a few weeks’ break from the shops, which will be unavoidable if this does become a full flare.

Thankfully, I’m doing really well in the admin officer job for RNIB (Royal National Institute for Blind People); however, I do have to commute 20 miles to the next city, and as I’m on my own, it’s a hard choice between propelling myself in the manual chair or taking my sticks. Also, the hospital link bus that I was taking has been canceled and replaced by a coach service very inconvenient for the disabled and the elderly, who comprise most of the passengers of the link bus. But that’s another post altogether, which I will hopefully write in the next week or so. But the work really is a lot easier for me, being computer-based, and the women I work with are so lovely. I also enjoy meeting the patients. I’ll be keeping this up while I take a break from the shops, health permitting! It’s easy enough for them to replace me on the till, but I’m the only admin assistant!

CN: mental illness, self-harm
Mentally, I’m not sure how I’m doing. Well at this current moment, but I’ve been a bit all over the place the last few weeks. I relapsed a few times with self-harming, and I don’t know if I’ve worked it out of my system again or if it’ll be another full blown relapse. I’ve been finding things easier to cope with because I have a great support system in many of my Twitter friends and my twin has been amazing as usual. I’ve been having anxiety about a few things, mainly PIP, getting the money for my motorized chair, and sorting out uni. I’m not usually anxious but recently I almost went into full panic that none of this was going to work out. It was a strange time for me. I’m just taking each day as it comes, to be honest, and not guilting myself over the self-harm.
END: mental illness, self-harm

I don’t think there’s much else to tell. Today’s my 24th birthday, but I’ve never really enjoyed New Year’s Eve! I’m mainly teetotal and only usually have a few drinks at this time of year. I’ve a bottle of rosé from Christmas and a red wine, and I’ll probably have most of that left tomorrow! I hate parties and get nervous around drunk people. I think my little sister wants to swap birthdays with me! Thankfully, I usually just do a family thing with my parents and the grandkids, on the computer, reading, writing, the usual, with some food. For New Year’s Resolutions, I mainly just want to organize my life a lot more, my bedroom, my inbox, my files and folders, and make sure I do some hobbies more often, such as art, playing keyboard, as health permits. Silly me is also planning to add new languages to my studies!

That’s about it; I’ve had to take so many breaks typing this post as my arms are not having it! I see my rheumatologist next month and will hopefully go another step toward sorting my sinuses. I hope everyone who celebrates had a great Christmas, happy holidays to all, and a Happy New Year! See you in 2015. x

ESA interview experience

Today I had my second interview with an ESA adviser–for those who don’t know, it’s Employment and Support Allowance, and you can read more about this benefit on the government website at https://www.gov.uk/employment-support-allowance/overview. There are two groups that claimants are put into, a work-related and a support-related, and surprisingly (or unsurprisingly considering this country’s treatment of disabled people these days!!!) I’m in the work-related group, so I’m always very nervous going along to the interviews as I’ve heard of people in the work-related group being forced onto various courses and placements.

However, I’m surprised and pleased that today went really well! The adviser wasn’t the one I saw last time, but she was great. She got the gist of my situation as she hadn’t met me before, and then I basically told her my plans, i.e. that I’m starting the admin volunteering in a few weeks and hoping to go to uni again next year. She was completely understanding of the fact that a voluntary position has so many more accommodations for me and the managers are much more understanding than an employer would be if I couldn’t make it in or can’t manage a particular task and so on. I told her that I can possibly use the admin experience later on to get a few hours a week in admin, which is much easier on my health than an actual retail job would be (again, volunteering in retail is tough for me, but much easier than a job in retail because of the compassion and accommodations they can make). But right now, I’m just seeing how it goes, and trying to keep up the charity shop once a week and the admin once a week.

My file just said lupus and “other conditions” so that wasn’t very informative! She was really cautious about asking me about my health details in case I wasn’t willing to go into the details, which was kind of nice actually, although I have no issue with it! I explained that most of the problem is the hypermobility particularly while using the manual wheelchair. I told her truthfully that I really want to work, as most people on benefits actually do, but right now using the manual doesn’t grant me independence, as I need someone to push it most of the time, although it does allow me to get out a lot more. I’m trying to acquire a motorized scooter, as I’ve mentioned before, so hopefully if/when I do, things will be much easier on me.

She was very sensitive to my needs and limitations. I mentioned mental health vaguely saying I wasn’t sure if it was on the file and she said to me that that’s something she really takes into account because if she pushes someone with mental illness too far and they suffer a relapse, then she would share something of the blame for that. This is pretty refreshing to hear from a Jobcentre employee to be perfectly honest! She’s happy to leave me to my plans for the moment, including getting further in my application for PIP, because as she says, there’s no point in them pushing me into mandatory things right now that I don’t like or won’t manage when I already have plans in place for myself, things I like and knowing my own limitations.

She did say that unless I have a dramatic change in my health, I will be in the work group for at least two years before they’ll consider re-assignment into the support group. I’ve been on ESA for about half a year now, I guess, so that’ll be another year and a half probably. It’s kind of ridiculous, but as I’m not having problems in the work group yet, I’m happy to leave things as they are. I don’t know if there’s a lot of difference in the policies and services here in Scotland and other parts of the UK, but a lot of the horror stories are coming from England, although we’re not perfect here either. (I’ve had problems with DLA and my sister’s having a lot of trouble with being forced into workfare when she has a two-year-old to look after.) But I’m really happy with my situation with ESA so far, and I realize how blessed I am to be able to say that. Now for the hurdle that is PIP, eek! (Considering they haven’t replied to my letter I sent three weeks ago, it’s not a good omen!)

Latest wheelchair adventures

So, as time goes on and on, I’m discovering more and more how the world is totally NOT adapted to wheelchair users, and that I can’t last much longer with a manual chair, with my upper body also affected by my conditions. It’s hard enough finding the physical strength to push myself, but my shoulder joints in particular are not feeling good, acromio-claviculars (where the collar bone joins the shoulder). I’ve been holding off on steroid injections in my shoulders until I’m desperate, but propelling myself in a manual chair is not exactly beneficial for the poor things.

A few weeks ago when I went for the interview for the RNIB position was the first day I had a proper day out alone with the chair. Usually I have my twin sister there to push me, although I’ll go around on my own in the shops or sometimes I manage around town while I’m waiting for her to get off work, for example. This trip was all on my very own from start to finish, so I was quite nervous how well I’d manage. Luckily, I can walk with my sticks, but obviously it’s not easy to push the wheelchair from standing and use the sticks at the same time, but I did manage just pushing, seeing as (funnily enough) my hospital is up a hill that I could never propel myself up. I managed the bus journeys fine on my own–I folded up the chair and sat in a seat, first to give my poor bum a break and also to sit facing forward on the journey. Traveling backwards is fine for local buses, but not for a whole journey to another town, even without my nausea. The biggest problem with the buses is the pole they have beside the wheelchair berth; it makes it very difficult to maneuver in and out of the space and I often get myself somewhat stuck.

The big mistake I made that day was getting the local bus into town and overdoing things. First of all, I made the journey backwards, and oh, of course, my nausea was so so bad that I spent the whole journey screwing up my face to hold back from throwing up. Lovely! Getting around town wasn’t too bad; I went to the mall to get myself a Subway and to have a look for some Christmas gifts (I know, I want to pretend it’s not happening, but I’d be ecstatic this year if I actually manage to get the few gifts I’m buying sorted well in advance for once!). In Subway it’s always quite tight spaces, even without a chair, not only in between the tables but going around the queue as the standing space is bordered by tables on one side and then the toilets at a very tight corner. Not exactly intelligent design. I got my chair round and when they asked if I would be sitting in, I joked “If I can find a table!” I did hear one of the workers asking another if there was a particular table free as she had a customer in a wheelchair waiting, but I never heard anything after that, so I actually ended up sitting just outside the restaurant area in my chair and called my sister to chat until someone close by finished up and I managed to get a table at a more spacious area.

The mall was generally good, nice smooth floors and elevators as you’d expected. The only issue was some fairly steep gradients; gradients in grounds and floors don’t seem much at all until you’re rolling up or down them, let me tell you! The slightest incline in a pavement can make it virtually impossible for me to keep in control of the chair. One in particular was a challenge to get up, and partway up a child stepped in front of me; I had to keep going or I’d be rolling back down! (Obviously he got out of my way. :P) As for going down inclines, I thought a few times I’d end up on the heels of people in front of me, so I often waited for a bit of free space. Just little things like that you don’t consider would be a problem, and maybe they’re not for many manual wheelchair users with good upper body strength, but they were exhausting for me.

When I was getting the bus back to the hospital in order to catch the bus back home was when things really went to pot! A guy I’d got talking to in one of the shops ended up bumping into me at the bus stop and before long we were chatting again like old friends, which was nice. What wasn’t so nice was him telling me to get a particular bus and others at the bus stop agreeing it would get me back to the hospital. First, I missed the one that came because there was already a wheelchair on it–a third guy came along and had to be turned away too, so he and I had a bit of a moan about it. It’s frustrating that buses will only carry one wheelchair. There must be people who go out with other people in chairs–then they must take extra buses? As the guy was saying to me, they could make at least another wheelchair space, especially as there’s often extra space for buggies which could go into a designated wheelchair space.

Anyway, when I finally got on the next one, I got settled in and then the fare man came to sell the tickets. I asked for the hospital and he just said, “You’re on the wrong bus, mate.” I was like “Are you serious?!”, explaining people had told me this one! He was really helpful and got me off at the next stop and gave me directions to the bus stop I needed. Unfortunately it was up a hill. I could not manage at all and had to push my chair up the hill again. Then when I got the chair onto the bus, I was still standing when the driver started driving and so I went flying! On top of that, when we got to the hospital, I had to wait ages and knock on the driver’s booth to get him to get the ramp because, in his words, “I forgot you were on board, pal”. Charming!!! I should mention that this whole incident with the buses was even more stressful because my sister had told me the last bus home was at 16.10 (which it wasn’t, by the way!).

The same trip to Dundee this week was not as bad because I didn’t go into town, but the bus home did break down, so we had to get onto another one on the motorway. The driver made sure in advance I’d be fine, and when the passengers were disembarking, at least three asked me if I needed any help; one woman offered to carry my backpack. I thought it was really kind, but I got an insight into why so many disabled people find it frustrating to be constantly offered help. I thought, the third person would have heard me refuse the first two, but still asked me as though I’m not sure of what I can and can’t do, which is annoying, to be honest, but I was grateful for the offers. We disabled people very often feel torn between being grateful for offers of help but resenting something in it at the same time. I know people mean well most of the time, but there is an underlying issue sometimes.

Anyway, I didn’t have too many dramatic problems, thankfully, although I really do struggle in the manual chair when I’m on my own. In preparation for returning to uni to do my Masters, I’m setting up a fundraiser page so I can get myself a motorized chair, yay. A manual chair is very stressful on many of my joints due to hypermobility. Fingers crossed! One problem I did have was in Home Bargains, where the wheelchair trolleys were being used by employees to stock the shelves. ¬_¬ I did complain to them on Twitter at least.

But as every day in a wheelchair teaches me again, the world has a long way to do in terms of accessibility.

New volunteering position–admin assistant for RNIB

Yet again, it’s been far too long since I wrote anything here. As usual, it’s been a combination of crap health and not having much interesting to say! (Or indeed, me getting little bits out on my personal Twitter about my day and forgetting to collate everything into a post here.) So, I thought I’d write a post generally about my recent days out and the new position I’ve got volunteering for the Royal National Institute of Blind People (RNIB). They were looking for an admin assistant at the hospital about 20 miles from me, and I’ve been looking for admin work, so it’s the perfect combination. I’m hoping later on if I can get a small part-time job to get something in the admin sphere rather than retail, although I’m continuing to work in the charity shops, each one every two weeks. So many allowances and accommodations are made for me in volunteering that are just not easy to find in a paid job right now. I’ll probably write more about the antics with my first proper days out alone with the manual wheelchair in another post.

I went through a couple of weeks ago to Dundee for the interview and met the woman I’ll mostly be working with, Ann-Marie, and also one of the guys who works through in Glasgow, Blessing. The interview was very informal, and I felt I did really well. I’d answered a lot of their questions before they actually came around, haha. I have no previous admin experiences, but of course through uni and just generally computer use, I’ve become very computer-literate and tech-savvy, and am very comfortable using a lot of programs. I’m also learning coding languages. The questions were more based on how you prioritize and ensure patient confidentiality and this kind of thing. I think it also helped I’d done a placement in the orthopedics department at my local hospital, although this work is more behind the scenes with the RNIB rather than the NHS.

The RNIB basically provides all sorts of support for people with impaired sight or sight loss, including general emotional support with coming to terms with sight loss or more focused approaches to finding employment and that kind of thing. You can read more about them on their website http://www.rnib.org.uk if interested. They also have many aids and accessories for sale to help with everyday living.

Later that day, Blessing emailed to let me know I’d been successful, which is great news! I went in a few days ago more to just hand in IDs and got a short introduction to the people around and a look around the department. It’s a fairly small outpatients department, so it can be quite a pain with the wheelchair. The staff toilet is not that accessible either as it has two doors and a corner to get in, so I’m not even going to try with the chair! It’s fine for me as I can use my sticks, but it’s not really acceptable. They weren’t sure how mobile I am so they sorted out making sure I could get my wheelchair under the desk and stuff, but I said I’d probably shift over to a normal chair while I’m there anyway, as sitting in the wheelchair for too long gets very uncomfortable and sore on my hips.

I’ll mostly be working with Ann-Marie and Nina, who is sight impaired herself and brings in her guide dog, Ivy, when she’s in working. I got to meet Nina and Ivy, and it’s very exciting to have regular contact with an animal again, since I had to stop volunteering at the cat shelter. Ivy’s very playful and lovable when her harness comes off, and it’ll take me a while to get used to a boisterous dog! She’s absolutely lovely.

My main tasks are a hodge-podge of things, really, depending on what needs done. Ann-Marie basically needs someone to tackle the piles of paperwork, so much of it will be entering data and doing spreadsheets; I told her I’m one of those odd people who fairly enjoys doing spreadsheets and statistics and entering data, haha. I didn’t quite tell them about my elaborate spreadsheets for my novel writing, my book collection…! But there also some other tasks such as printing Braille stickers on our leaflets so that Nina can get around more easily, organizing and ordering documents, also phoning patients and booking venues for various workshops that they offer. It’s one of these positions where you more or less learn your way around on the job and there are always people around. I met a few of the consultants in the department too.

Pending my references, I should be starting in a few weeks. I’m very excited! Of course, it’s a big undertaking physically, as I have to travel through to Dundee one day a week and I’ll still be doing a day in my local charity stores on top of that. I’ll probably take the wheelchair through most times, just to be on the safe side, even if I end up using my sticks while I’m there. There is a bus link between the two hospitals, so it’s not too difficult for me to push my chair up the hill to my local hospital to catch it. The charity will also refund my travel costs–I don’t claim bus costs back from the local stores, as it feels very rude and unnecessary, but I probably will claim for this as it’s quite a lot of money for the return ticket each week. They know about my lupus, and when I went to hand in the IDs, we ended up just chatting for a while, and the topic did come up so they’ve got some awareness of how it affects me. The great thing about volunteering is that they are usually so much more willing to make accommodations, and of course if you can’t make it one day or can’t do an assigned task, there’s not the same pressure as there might be in a paid job.

So it’ll be good to get me out of the house more often and build up some experience. I’m hoping I do manage the extra load, but I was working back up to doing the two charity shops per week as I was before my surgeries last year anyway. I’m excited to start. 🙂

The issues I feel surrounding “ice bucket” and similar “awareness” trends

Many of you have probably heard about this new “ice bucket challenge” trend, which is to apparently raise awareness for amyotrophic lateral sclerosis, or ALS. Similarly recently there was the “no make-up selfie” campaign for breast cancer. I’ll make this point here at the beginning: 1. This post doesn’t concern everyone who did the challenge and donated or shared information to raise awareness. 2. I’m not ungrateful for the money that these campaigns do raise. I’m not just shitting on people who did this, but hopefully some will see the issues behind it that some of us in the disabled community finds and finds uncomfortable. Others do share my views, but everything in this post is written for my two cents on the topic.

I think my first point is that many people are doing this under the guise of “raising awareness”. Naming a disease does not contribute much to awareness, which is so much than knowing a disease’s name and that it exists. If you’re fundraising, then call it that! Fundraising itself isn’t a bad thing, but it’s not the same as raising awareness. For the breast cancer selfies and various other breast cancer campaigns, what does naming the disease tell anyone? I know many people *did* share information, such as information about the disease itself but also how to check your breasts for any changes and so on. This is good! That is raising awareness! Not everyone who has taken part in these trends comes under the group of people simply taking part in a trend and feeling like they’ve done something.

But some do. Day in, day out, we disabled people deal with so-called allies like this, people who make out they’re “on our side” and are fighting the fight with us, but when push comes to shove, they’re nowhere to be seen. When we tell them that something they’ve said or done is problematic, unlike a true ally they switch off from the conversation and take offense, instead of listening, apologizing, and doing all they can to change the way they think about that particular aspect. They are in it for the “ally cookies”; they do a little bit, feel it’s enough, but then when they’re called out, apparently one disabled person whom they saw as rude is enough to have them give up for the entire community. Not exactly an ally!

There’s no doubt that not everyone doing these trends are ableist or false allies. I’m not saying that, and if you think I am, you might as well stop reading right now. In case anyone would like to derail this, I will state here, in bold, that these campaigns *do* raise both money and to a smaller extent awareness. But to me there are broader issues. Most people, if not all, doing these trends have good intentions, but there’s something in there of people getting their kudos for doing something against diseases but then not actually giving a shit for its sufferers right here, right now. There is a focus on treatments and hypothetical future cures–which of course we all want anyway–but then the same people don’t care for the disabled community as a whole around them. And I think that’s why these things make me uncomfortable. I don’t doubt there are people who have done this challenge who have or will still go on to make fun of Stephen Hawking, who has ALS. Many of us in the disabled community will tell you that while we are disabled by our diseases, issues of ableism make our lives more difficult in many aspects, so there’s something off, to me, about people joining these trends to do their little bit for these diseases, but then continuing on with gross ableism and not actually caring about sufferers or the disabled community beyond that.

If you think this is me not caring about research, then you’re wrong. As both a lupus sufferer and an anatomist, I know how vital research is. I know it’s not just millions of pounds going into vague research ideas about a cure that may or may not exist. My issue is not with the researchers, nor the charities raising money for research, nor the people who do care beyond the trends but who also have contributed to them. If you’re still getting this message, I can’t help but feel you’re plugging up your ears saying “la la la” because you feel you’ve done a good thing by contributing to fundraising and awareness; you have. Believe me, I’m fully aware that there may be no cure for lupus, but I know that research is about more than just a possible cure. If there was a trendy campaign for lupus, I’d be grateful, both for the money it raises and for the awareness, even if small. I’ll spell out again that I’m not saying these campaigns are useless, nor that they don’t do what they’re designed to do, again, even if lacking on the awareness side. The issue to me is people thinking that they’re not ableist or that they’ve done all they need to do by joining a trend and giving a few pound to charity. I’m aware we can’t do everything, we can’t campaign and share information and fundraise for every possible disease.

It’s not that the research shuns the living community in favor of a hypothetical cure. It’s the false allies who do, and it’s the false allyship that I have a problem with. It’s a sad fact of life that disease research needs so much money–big pharma etc. is another issue altogether. I guess this whole thing is less about the trends themselves and more about false allies, or people who don’t actually care about ALS but who just want to jump on the latest trend. <strong>If this doesn’t apply to you, then I’m not talking about you.</strong> I’m not saying we don’t want your money either–hell, I’m grateful for research money wherever it comes from, as, cures aside, research leads to new treatments that greatly improve the quality of life for people suffering all sorts of conditions. But remember that supporting the disabled community goes far beyond giving money for research, and if you don’t care beyond the faceless name of a disease and its possible cure, definitely if you’re ableist in any way and would use the fact that you did donate to derail all of these arguments, then just know that you’re not helping the community as much as you think. In any social justice fight, I’m aware that we do what we can and often that isn’t a lot, but I won’t stand for the way so-called allies try to force us to feel grateful for a tidbit, for scraps, while they continue ignoring the disabled community, people who basically say “but I said something good against ableism, you can’t dismiss anything else I said”, and believe me, I’ve had those. It’s not a case of saying everyone has to suddenly become advocates of every disease and that the general public doing a little bit here and there isn’t effective. It’s a case of the people who shoot us down, derail us, basically tell us we’re wrong about our own experiences while claiming kudos because they fulfilled some trend for some disease at some point.

Caveats. (Fairly intuitive, I’d think, but there’s always someone who misses chunks and will shoot me down for being ungrateful.)
1. I don’t speak for all of the disabled community, obviously, and not for those with ALS.
2. Any offense on my part is not geared toward everyone who took part or everyone who is grateful for these campaigns.
3. I’m not saying we can’t all do our little bit and dismissing you because you’re not a full-time disability advocate.
4. I’m not saying that everyone who messes up and says something ableist is a false ally.
5. Finally, what I call false allies is not always people purposefully just jumping on bandwagons and wanting kudos when they know they blatantly don’t care. Often they have good intentions but again and again derail and silence disabled people on disability and ableism in general in favor of their own views.

Some links about ALS:
http://en.wikipedia.org/wiki/Amyotrophic_lateral_sclerosis
http://www.alsa.org/about-als/what-is-als.html
http://www.ninds.nih.gov/disorders/amyotrophiclateralsclerosis/detail_ALS.htm
http://journeyonwithroyce.blogspot.co.uk/
http://thealsexpress.com/my-blog/
http://health.ucsd.edu/specialties/neuro/specialty-programs/als-clinic/als-resources/Pages/meet-patty-blake.aspx

Recent doc visit + busy week

From last night’s post, it possibly seems that I’m in a worse place than I am. I’m still absorbing the news, and it’s also hard when suddenly mental illness and suicide are thrown into the spotlight like this. I’m doing o.k. just now, feeling that I’m wobbling on top of the slippery slope; it might happen, it might not. So I wanted to give a general update on my physical health now.

Last week was pretty busy for me lately as my health’s worsened. I think I did three or four days in a row out. Monday the 4th was my nephew’s 2nd and my dad’s 52nd birthday, and we had a party in a room at a local pub with a bouncy castle for the kids. Although I didn’t do much physically, it’s quite striking how much a day out can take out of you! Even just using sticks to get around is so taxing. I managed to volunteer the next day too, which was great. I think it was a few days after that I finally snapped and tidied up my bedroom; my sister was changing to half-day shifts that week, but for some reason I just decided I couldn’t bear it any longer. Big mistake! I was soaked to the skin with sweat, popping painkillers, ooh, I felt it badly later. The day after or so I went grocery shopping, thinking because I’d be in the chair it wouldn’t be a big deal, right? Ohhh! Maybe one day I’ll finally learn! I used the store’s chairs, even though they’re not as uncomfortable, so that we’d actually have space in the car for the shopping instead of my own wheelchair. But even the walk with the sticks into the store… ouch! At least I made progress with the bedroom, right?! As I share with my twin, there really isn’t enough space for two people’s stuff, so we’re trying to organize everything, but it’s difficult as there’s just no space. Hopefully this means I can sort my desk out soon though and have a workspace again.

I can’t remember when I went to the doctor, but at least I got everything I needed sorted out. I got my pills changed over from co-codamol to dihydrocodeine, as I just feel the latter works better for me; I wasn’t positive whether it was to co-codamol causing the nausea, but I do tolerate dihydrocodeine better, I think, also it means I can still use the paracetamol as a baseline, even at times I don’t need the opiate dose. Fingers crossed it works out better anyway; the co-codamol wasn’t too much of an issue, though. I’m actually still finishing some of it that I have left. And, because taking opiates regularly and long-term slows the bowel, I got some laxative sachets just in case; recently, I had the worst, worst constipation I have ever endured–pain sweats, agony, thought I was going to faint, the lot! Luckily(?), because of my IBS, it’s not something I have to deal with too often as I usually have the opposite problem of diarrhea! But it’s nice to have the sachets ready just in case. I explained to him about my sinuses, and I’m trying a steroid spray for two months, and we’ll see how it works out. I can’t say I’ve noticed a dramatic difference, but my sinuses had been relatively calm around the time I started with the spray anyway.

Nothing much else to report! I’m getting on with transcribing, translating, reading and accumulating too many books. Very soon I have to start putting everything into motion to getting back into uni for my masters in 2015. And soon I also want to start again in earnest on a physio plan, something small enough that I can manage consistently.