I am blessed to live in a city that is on the cutting edge of autism research in a state that provides awesome services for adults (no housing help, but that aside, I have it good). I mean, there are definitely still issues on all fronts, but people in my area are really trying, and I appreciate that. We're on our way, if nothing else.
So, next week in my city there is a big (in terms of big deal, not sure how large of a turnout there will be) conference about "Autism Through the Lifespan." There will be speakers and workshops and the like. And the coolest part? They so want people on the spectrum to attend that we are admitted free of charge!
Great! Right? Well... Yes, I may be free of charge... but my autism is such that I require either my mom or my CI to be with me if I am to sit through and thus getting anything from this conference. I mean, I can't even get through my hour and a half long bible study without a break or two. So, in order for me to bring Laura, it would be a $95 admission. I can't ask Laura to pay that. Her company has no allowance for working with me. I certainly can't afford that, and even if I could, it's against company policy for me to pay for her.
So, you see, I really can't go to the conference.
The message they are sending is that they want people on the spectrum to attend... but only the most independent among us. How is that supposed to make me feel?
I said I wouldn't write the person in charge an email. For over a week I held out. And then I fussed in my group today (at the study I'm in that I complain about all the time), and someone said, "But you know, there may be others in your position too." And that did me in. I came home and wrote to the president of the organization that hosts the conference.
Because really, how far is it? It's not. I matter too. We all do.... not just those of us that give autism a good name, but all of us, on all kinds of days, at all levels of independence. And an organization specifically for people on the spectrum should be the first in line to promote that idea. I'll update you on if and how she replies...
Editor's note: Thanks to Adelaide (see comments) I think I found my way around whatever setting got screwy! THANK YOU!
Good for you Lydia! I hope your letter makes a difference!
ReplyDeleteHi Lydia.
ReplyDeleteThe paragraph tags include (br) and (p).
(Replace the round brackets with greater than and less than signs, then insert).
Or probably make an outline.
(Are you in visual mode or markup mode?)
Remembering a self-advocate talking about this some years ago [2007-08] in the Netherlands.
Very excited about the stipends and the free conference. (families and carers were often charged less than a professional might have to pay).
Hopefully you and the others can meet and help each other.
(Wonder if there's a setting which has gone awry?)
Well I think if they want people with autism there they have to let them attend for free with whatever support is required for them to manage and engage with the conference. As you say, an organisation proporting to be pro-autism awareness should be first in line to support those most in need.
ReplyDeleteGood for you Lydia!
Adelaide, I'm sorry, but I don't understand. Computer language is the one subject that is quite decidedly NOT my thing. At all. Never met learning I didn't like, except for those darned computers and their languages. How do I use the (p) and what is visual/markup mode?
ReplyDeleteHA! It's not perfect, but check that out! Much easier on the eyes. I played around and figured the (p) thing out :)
ReplyDeleteLydia:
ReplyDeleteHappy you've figured it out!
the (p) was one of the very first things I figured out on computers, even before I had a formal IT class.
One of my things is desktop publishing, and in PageMaker there was a Story Editor which had paragraphs and style edits. Thus you could tell it to be bold, italic and so on. And you would be acting on this plain text.
(Admittedly, it added code...)
And I also learnt about visual and mark-up mode from EduBlogs. Some of the students were having trouble with their ToonDoos (a place where you might make social cartoons). Usually when they were in visual mode they couldn't do it, but in mark-up mode they could.
Have a great conference next week.
(Isn't there a line on the first registration page with accomodations? That's usually fairly open-ended. In practice?).
P=paragraph
BR=break.
go girl! i'm so glad you wrote the letter. i hope ot gets them thinking at least!
ReplyDelete