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.

Employment and Support Allowance – meeting with work adviser

I receive a benefit here in the UK called Employment and Support Allowance (ESA), which is a benefit to help those ill or disabled who are unemployed or working under 16 hours a week. There are two groups into which claimants are placed, the work-related group, or the support group. There has been a lot of issues recently concerning disabled rights here in the UK, and many people who felt they should be placed in the support group have been placed in the work group and been unable to manage, and it’s been a very difficult time to get changed. Many disabled people have struggled to get ESA in the first place as well as disability allowance (for which I lost my appeal last month), and there have been many awful stories about various people who have been sanctioned by the DWP (Department of Work and Pensions) for the slightest little thing; to give the most awful examples, a man was sanctioned for “leaving the assessment” when he had a heart attack during it! I read of a mentally ill man who was not only sanctioned but arrested for making a joke in the Jobcentre.

Anyway, as such, I was getting very anxious about the first appointment with my work adviser, as I closely follow much of the benefits scandal and disability rights, and I thought because I was put into the work group that they would give me many mandatory workshops etc., and push me into work beyond my capabilities. Well, I got very lucky, and got a lovely adviser! Before I went, I was thinking, “I’m going to put all of the lurid details about this appt on this blog; people need to know!” Yet thankfully I have a positive experience to relate.

She was very sympathetic toward lupus, and listened to me as I explained the limitations it has, particularly the unpredictability and having to avoid going out surrounding scheduled events; as an example, I had been hoping to get back to volunteering the day before the interview, but explained to her that I decided against it as it would risk me not being able to get to the interview.

As of now, I have no mandatory tasks. I am free to find part-time work under 16 hours a week if I can as long as I let them know. I told her how I’m looking into further study too, part-time. If I need any further help, I’m free to drop in – the biggest issue for me is being able to find a sympathetic employer because of the unpredictability of the disease; not many are going to be happy with an employee who doesn’t know whether he can work until the actual day!

I am so relieved that I’ve been one of the lucky ones so far, and my heart goes out to everyone who has been screwed over. I very much want to work and I hope that with my adviser’s help I can find a manageable position for me, even if it means working at home on my own hours. I am applying for PIP (Personal Independence Payment, basically the standard disability benefit after DLA was removed) after losing my DLA appeal, and although it’s stressful as hell, I’m not going to give up. No matter how long it takes, my needs are my needs, and I’m going to try to not let them grind me down so far into not bothering anymore!