>You know the really cool almost perfect for me opportunity that I mentioned in this entry?

Well, I just got an e-mail about it. And it’s happening.

My contribution won’t be exactly what they asked for because the constraints of the project and what I can offer them don’t mesh completely. But the person in charge of it put in her e-mail that she feels that what I can offer is both “interesting and relevant” and so I still get to take part! It really is as perfect for me as it could be given that I knew when I offered to contribute that I wasn’t what they wanted exactly.

(yes I know this entry is cagey, deal with it)

Basically in 2004 I wrote an article/profile piece on myself and my experiences as a disabled person at university. This was published by Skill and then reprinted last year by Full On magazine. A couple of weeks ago my contact at Skill got in touch and said she’d been contacted to see if she knew of anyone who would be willing to be a case study of disabled people’s experiences with job hunting/starting work.

I e-mailed her and said this is my situation blah blah blah I know this isn’t quite what is wanted/needed but I would be willing to contribute. And she forwarded my info/details to the editor of this new project.

I’ve been asked to provide some quotes of why I chose voluntary work and what I like about it as well as a brief biography of myself!!!!!!

It may not be a full article but it still is a great opportunity for raising awareness and furthering my cause. I’m really pleased.


>Keep on keeping on

>That’s been my motto for the last few days and I think i may slowly, very slowly, be getting there.

A very good friend (who knows who she is) plugged me into a support system yesterday and that’s been really helpful. That’s all I’m happy to talk about that here at the moment. Oh actually I might just add that I appear to be unable to turn my CAB brain off and there is a tiny tiny silly thing about this support system that is making my CAB side go “ARRRRRGH should you really be doing that?!” not because it bothers me but as always seems to be the story with me because it might bother others. Perhaps I should stop worrying about others and start putting me first. That would be a very novel idea, wouldn’t it?

I am still going to go to the doctors but not on a medically urgent appt. I’m going to aggressively pursue getting my hormones checked out. I don’t think there’s any small coincidence in that fact that I’ve been crazy crazy for a couple of weeks when my period went awol and then today it put in an appearance and I began to feel like there’s a light again.

And aren’t NHS waiting lists wonderful things? I went on the waiting list for something in August and was told six weeks or so. In January they wrote and said did I still want an appt so I said yes. Today they called and I finally have an appt. On Wednesday.

Longest. Six. Weeks. Ever.

>Respect for all

>I believe that disability awareness is a very good thing, as is acceptance. I also believe that some people who harp on about how people need to be more aware and/or accepting are hypocritical.

Someone I know (but don’t know that well) and his partner have recently spent a considerable amount of time talking to me about how it isn’t fair the way disabled people get treated and everything we have to go thru. He had a stroke a few years ago.

Yes, disabled people deserve respect. I agree with that. Yes, we should be treated the same as normal people. I agree with that, although I don’t agree with the term “normal” in this context. I wouldn’t say that everything I go thru isn’t fair. But then this is where my perspective differs as I’ve been disabled from birth and disability is all I’ve ever known as a lifestyle.

Unfortunately it’s not the only point on which our opinions differ on this issue. Because then we come to Lucille.

When I was 16 I met Lucille, and we became great friends. We shared a taxi to college and even though we weren’t on the same course we often saw each other during breaks and got on fabulously. Lucille is also disabled, because she had meningitis when she was 4. She has some physical difficulties and uses a walker. She also has learning difficulties and although she is 24 like me she has a mental age of 8 or 9. Neither of us are at college any more and we didn’t see each other for a long time. I cried my eyes out that last day at college because I thought I wouldn’t see her again.

But then I started going to a disabled swimming group with Ryder Cheshire Volunteers. And then a few weeks later Lucille started going to the same session with a group she belongs to. Our friendship continued as though the four years that had past were four days.

I go every week, she goes alternate weeks. So one week I swim seriously and the second I swim a little, I chat, I tease, I joke, I giggle and I hang out with my friend. I have a great time. I look forward to those Friday’s because I love Lucille to bits and spending time with her always makes me feel better about myself. We usually get together in the coffee shop for a coke and some chocolate and chatting after swimming.

And we were sat there the other day we were sat with the people who I’d talked about awareness with. When Lucille went to the vending machine just after I got to the table they were saying to me “she just said… is that right?”. If she told you it, it’s right. I don’t know her entire life story.

Then they laughed at her when I asked her a question when she was eating and when she had finished she told me “it’s rude to talk with your mouth full.” It is rude, but it’s ruder still to laugh at someone and go “she knows, see” like your surprised that she has basic manners. In fact, that appears to show that she has more manners than they do.

After a while we got onto disabilities and she explained about her disability, they commented that “she just wants to be normal poor little girl.” Now, I’ll forgive their calling her a little girl for she is very short but she is not a poor little girl. As a matter of fact I was so proud of her. For she sat there and said “I’m only disabled because I had meningitis, if I hadn’t had it I wouldn’t be disabled. But it’s OK, I’m here.”

I don’t know many people who could sit there and say that. And how they got “she just wants to be normal” from that I don’t know.

Lucille might have learning difficulties but she is intelligent. She can deal with the money in her purse and read what number it is to get her chocolate from the vending machine just as well as I can. Hell, she often ends up helping me as I can’t always reach it to get it out of the tray. She can write, read a little, swim, use a computer, goes to the gym, helps to look after her nieces and nephews and plays bowling along with loads of other stuff. I love Lucille to bits and I wish more people were like her. At times she may be a little naive but it’s part of what makes her who she is, and when it comes down to it she knows what matters and what counts.

My friends with the problems about people treating them with respect… they don’t know what matters. Respect is earned, not given and if they can sit there and be blatantly disrespectful to someone they know is one of my best friends because her disability is greatly different to theirs then I’m not going to respectful to them.

And if they want respect because of the disability of one of them/the status of the other as a carer they have to respect others with a disability. Because if they respect those with a physical condition but not those with learning issues, they are just as bad as those able bodied people they were complaining about.

My acquaintance deserves respect, I deserve respect and every Tom, Dick or Harry deserves respect regardless of disability or not. But, Lucille deserves respect too.

Respect, acceptance and access are things all people deserve. But I want it for everyone, not just those who have a type of disability similar to mine. And until people (including those with long term illness and physical disabilities) realise that that people with learning disabilities are just as deserving if not more so of respect and acceptance the fight for it isn’t going to be over. It seems to me that we’ve only just begun.

If we respect those with a physical condition but not those with learning issues, we are just as bad as those able bodied people we were complaining about. Something which is nothing if not hypocritical.

Lucille, I know chances are you will never read this but I just wanted to let you know how glad I am that you are in my life. You are one of the strongest people I know and you have a talent for helping me without realising it. Love you honey xxx