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.

Inaccessible bus service

So, I’ve been building up to this post for a while now, since the local bus company in my town thought it appropriate to exchange an intercity bus link between two hospitals, a spacious bus with a low step onto it and with multiple spaces for wheelchairs, Zimmer frames etc., to a barely accessible coach with only two accessible downstairs seats, stairs about a foot high each to get upstairs, when it’s a service that only runs once an hour.

Since I started volunteering with RNIB in the hospital in the next city, I’ve used the intercity hospital link bus every week to commute. It was so convenient for various reasons; my local hospital is just up the hill for me, so it’s not far to go to the bus stop; there’s enough space for me to stay in my wheelchair if I want and also for others in chairs or with frames or buggies and so on; getting on and off the bus was easy for me as it was a low step, so I could get out of my chair and gently bump it up, or stay in it and have my sister or mum (if they have dropped me off) or the driver get me on. It stops at the hospital in the next city so I don’t have to travel far to get into the department. For a few weeks, it was absolutely ideal.

One day my mum took me up and it was a different bus there altogether. Instead of the style of the local city buses, it was a double-decker coach with a different route code on it. I asked Mum to ask the driver if he was replacing the hospital link that day and he informed us that it didn’t exist anymore. Basically, a coach service with a route throughout most of Scotland had been changed to include this route. The company has lauded the coaches because they have better Wifi and comfy chairs… Yes, the seats are much comfier, I’ll grant, but I’d rather have a bus I can access rather than a padded seat… And I say this as someone with impacting hip joints that give me a lot of pain on sitting down!

The coaches that have been used 99% of the time, and I think this is the new type and the exception was an older one, has quite a big step to get onto in the first place even with the suspension lowered. Then there’s the backrest for the wheelchair right next to the driver’s box and so there isn’t a lot of space to get in and pay. The only two accessible seats without taking stairs are situated directly behind the driver’s box; there’s not much space in them at all, especially when you have sticks to deal with. I was traveling with a man who had a prosthetic leg one week, and there was not enough space for him to have his leg up; he had to sit on the side with his leg hanging into the aisle. Also, the floor space is so high that a man who I regularly sit beside on the journey can’t actually lift his legs high enough to sit straight ahead, so he too has to sit hanging off the seat. On the older coach, there were stairs to get on regardless, and to get on in my wheelchair, I had to take the very slow chair lift, which was frustrating and quite embarrassing. Everyone’s waiting to get going, and we have to wait while I board the bus and have my chair strapped in and so on. Whether people are thinking along those lines or not, I did feel like a spectacle and it was fairly humiliating. Disabled people just want to get on and off the bus reasonably quickly like anyone else.

With the service only running once an hour, it means that we can afford even less to say “Oh, it’s o.k., I’ll get the next bus.” I’ve actually had to go up the stairs at least twice. It was very difficult, painful, and awkward. The first time I was already in the access seat next to an elderly man, but a woman came on with a shattered ankle, and I felt that out of the three of us, I had the best chance of getting up the stairs. It was either that or say to the woman “No, sorry, you’ll have to wait another hour for the next bus”. I know I didn’t strictly have to, but I didn’t exactly have a good choice either way. The second time I think a couple was already in the seats, and I didn’t want to presume and ask them to move. However, a few stops later, they did come upstairs for someone else to get the access seats, so maybe I should have asked, but I don’t know if they only came up as I had because they felt someone else needed it more. Unfortunately, I’m getting to the point where I am just going to have to tell people sorry, I can’t move. It’s none of our faults but someone has to lose out.

I have to say though, the drivers have been faultless. Whether making sure I’m managing to get on board and in the seat, loading and offloading my wheelchair in the luggage space (which I do every time now, as frankly it’s just easier and I realize I’m lucky to have this option because I can get out of my chair, which some can’t), or getting me on the chair lift as the one driver did. Fellow passengers have also generally been so helpful; when I get out of my chair and leave it folded outside, people sometimes realize what’s going on and offer to put it in the luggage hold for me, or someone in front of me will let the driver know. I’m getting to know quite a few of the drivers now as it’s the same crew on shifts and I guess I’m fairly distinctive as passengers go!

I know many of the drivers have not been happy about the change, and they do realize how hard it is for passengers with mobility issues. Unfortunately, they can’t really discuss it in depth with us passengers as they could lose their jobs. A few weeks ago, someone told me that there was going to be a meeting about the coaches because so many passengers had complained, but unfortunately it seems nothing has come of it. A few days ago, I read that the bosses aren’t worried about the concerns as they’re making more money on this service than ever… Lovely ableism there of dismissing the concerns of disabled people trying to access a bus to a hospital because they apparently have enough abled passengers paying for comfy seats!

I just feel very dismissed. It’s despicable that a bus company thinks it’s acceptable to have only two accessible seats on an intercity hospital link bus that only runs once an hour. It’s used a lot by pensioners as well. It’s utterly ridiculous to assume that only two people with mobility issues, visible or invisible, will need this bus at any one time. And frankly I don’t have many polite words for the company that thinks the concerns aren’t valid or worth acting upon because abled people without access issues are managing to use the bus… Unfortunately, I’ll have to deal with it each week in the foreseeable future and hope that greedy companies will start listening to our needs. It doesn’t alienate abled passengers to include access for disabled ones, but it certainly alienates us by restricting our access and not listening to our complaints. Life in an ableist world, eh?