The next edition of the Disability Blog Carnival is on Thursday over at Wheelie Catholic. It's theme is Appreciating Allies.
For me that's something of a tough theme to think about at the moment. I don't mean to seem "bah humbug" or like I don't appreciate my friends and family in saying that. Because I do. But currently I'm at something of a low point and that's how I feel.
Without going into long gone irrelevant matters I will try to explain some of my thoughts on Allies in the "fight".
I have a friend with similar disabilities to me who frequently complains that I have much more in my life than she does. I mean in terms of my having an adapted flat, of having various pieces of equipment and mostly in my independence - in living alone. Maybe from her point of view I am luckier than she is, and maybe I am more able than she is.
I don't think it comes down to how "affected" she is compared to me or any such. That's all subject to your perspective and as such is subjective.
Personally I believe that I have everything I've got not because it was given to me but because I made it happen. Yes, I have an adapted flat near to town and I live alone when a lot of disabled people don't have that. Yes, my Occupational Therapists and Social Workers and many many other public sector staff members did things for me that they don't do for the majority of the people out there.
But that's because with the help of my family and a few good friends I set goals for myself. And we found out how the system worked and made it work for me. It could possibly be considered that I played the system. I didn't. I just didn't allow it to stop me.
When I left uni in 2004 I was told that as long as I lived with my parents I could have no support from social services. My Dad had just had spinal surgery, my Nanny was in her 80s and not in good health, I have two younger siblings and my mum worked full time. Housing services said I'd have a very long wait for an adapted flat as long as I could live with my parents. I experienced a worsening of my depression. My care needs very nearly could have been the straw that broke the camels back.
Hello rock, this is a hard place.
My parents made me legally "homeless". I attended many difficult meetings with the support of a good friend and/or my parents. We all wrote letters explaining the situation. My GP at uni backed me up. So did my one at home. So did my parents. My so called social worker wrote reports and got me a great OT on board.
We hated every minute of it and I cried many bitter tears. The staff acted as though we were being unreasonable and my mum and I both felt very badly. But we knew that for us to survive and for me to thrive in my new life away from Uni this was what we needed to do. The independence I had spent four years in Stoke gaining had been hard won, I wasn't giving it up without a fight.
In the end we started trying to get support and services set up for me in April 2004. I finally made it into a permanent adapted flat in December 2005. For a while it seemed like every month that passed there was a new set back, another piece of bureaucracy that wanted to deny me the basic services my human rights entitle me to. Every single time I saw someone who even had the smallest chance of being able to help me I explained the situation, I explained what I was doing to resolve it and asked for their input. Many times I would experience cross purposes where one person at an organisation would agree to do something and then that would be denied by another.
There were lots of steps and moments along the way that I haven't mentioned here. There were times when it got too much for me. It was a lot more stressful and difficult than reading this would seem. It was a lot more stressful and difficult than it should have been.
I do appreciate all the help and support I received to help me accomplish my goal. But I do feel very strongly that most of it came about because the professionals had to do it. Because I fought them and pushed them. Because I screamed and cried and generally made a nuisance of myself. They were paid to be my so called "allies" in the fight and they pretended they had my best interests at heart. Yet they weren't interested in Me, Emma, I had to fight them for that help. I had to fight for what I was legally supposed to receive.
The friends and family who supported me are/were my allies. I hope they realised how grateful I was (and still am).