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.

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