I now see you responded to someone else with the same idea I suggested above. See further reply below.
skibum wrote:
Shadweller wrote:
This makes me feel sad and frustrated, so I can only imagine how much more magnified this must be for you.
I really hope that some kind of solution could be found as the reception to your book seems very positive and this could help a lot of people.
If you were to get your book published, and if it were to sell, would it be possible to get the publisher to donate the royalties direct to an Autism charity or something like that? Could that be checked with social security if that would be acceptable? Could you not sign on for benefits any months your book was to sell? And then sign back on again when there is no income from the book?
It's incredibly frustrating the way you have been trapped by the system, preventing you from contributing your talents to the community.
Thank you so much. Yes, it is extremely frustrating. Unfortunately, I would never donate my work to any Autism charities. I work extremely hard to produce any content that I produce, and I cannot tell you how the majority of Autism charities that I have contacted have rejected me and treated me badly. I was even kicked out of my local ASAN group because I challenged the leader of the group on how he was treating the people he was reaching out to.
I'm very sorry to hear that you were treated badly by ASAN!
One thing the autistic community desperately needs, IMO, is people who are trained in conflict resolution, to help quell this kind of infighting.
(Note to self: My own support group should start having discussions about conflict resolution again sometime soon.)
skibum wrote:
And I cannot tell you how many times I have been told that I should not be paid for the advocacy and educational work that I do. And I get told this by Autistic groups all the time.
Do you get told this by other well-funded groups like ASAN, or mostly just by groups that don't have much if any money, in the first place? (I'm asking this question about autistic-led groups only, not NT-led autism groups, which tend to be better-funded, so not being able to afford it wouldn't be their reason.)
skibum wrote:
Or the groups that are willing to pay, will only pay you a stupid pitiful amount. One group said they are willing to pay disabled people $25 to do workshops for them and that is all they are allowed to receive.
Perhaps some of them have this policy partly because they expect most disabled advocates to be on disability and thus cannot risk being paid more?
skibum wrote:
They expect me to just give my services and talents away for free. But they agree to pay nts all kinds of money to teach about Autism.
Sounds awfully ablist. Also, classist. People who are already rich and famous can get paid, other people can't.
skibum wrote:
Even when I have done official workshops for groups like Easter Seals and I have trained their staff on Autism and how to help their Autistic clients, I got told both times that they cannot justify paying me. They literally said that if I were Temple Grandin, they could pay me but because I am not her, I should never expect payment for my Autism workshops and advocacy work. And I believe that anyone who writes and publishes a book has the right to be paid so why should I be the exception especially when I am being forced to survive $3000 a year under the federal poverty limit just because I am disabled?
And none of those Autistic charities do anything at all to help Autistic people who are like me.
We need more autistic mutual aid societies, like the
Autistic Mutual Aid Society Edinburgh (in Scotland).
Unfortunately, the U.S.A. never ratified the United Nations Convention on the Rights of People with Disabilities (UN CRPD). So, "
Autistic People's Organizations" can't have the same legal status here in the U.S.A. that they can have in lots of other countries.
But it should still be possible for us to create mutual aid societies. That's one of my own eventual aims, if and when the cluster of
groups led or facilitated by members of the Autistic Peer Leadership Group gets big enough.
skibum wrote:
So many of us are struggling to no end because they refuse to provide services that we need to survive no matter how much we ask for them. They only provide help to Autistic children and to people who are considered "lower functioning." Anytime we ask for help with the things we need, we get told that our we are unreasonable to ask or to expect that we should get any help at all. They all say, "We understand that your struggles are significant and that you need help but we refuse to create programs to meet your needs. But keep giving us your money so that we can support the needs of Autistic people who are not you."
So I would never allow any proceeds from my work to go to charities. If the charities were helping me to survive, I might consider it for sure but since they reject me and people like me, I see no reason so support them with my efforts. If the money could be put into my able account, that would be the solution. I just can't find anyone who can give me the truth about how that works and it's too risky to get it wrong.
I'm very sorry to hear that you can't find a social worker who knows the details of how Able accounts work! Have you asked Dr. Tony Attwood to refer you to someone in the U.S.A. who might be able to find such a social worker?
I don't know such a social worker myself, but I will keep an eye out for them.
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27 Dec 2022, 3:30 am
