My Hope of a Better Day: Equality, Quality, and Inclusion
Published January 20, 2009 @ 09:53AM PT
When Obama gave his acceptance speech in November, it was the first time I'd ever seen or heard him speak. I'd read bits of transcripts of his speeches, and read a lot of discussions about his speeches, but I'd never actually seen or heard him speak. Because "Obama speaking" is nowhere near my areas of Interest, because following spoken language is so exhausting for me I tend to ration my exposure to it, and because anyway, politicians just blah blah blah about stuff that is so completely divorced from my reality, needs, or concerns--
So when the TV tuned to Obama's acceptance speech last fall, his unexpected and exquisitely stated inclusion of me in his words, "disabled and not disabled," literally made me cry. And I do not cry easily. I have gone years before without shedding a single tear.
I cried again the next day, and even more profusely, when I read Obama's Disabilities Agenda because educational opportunities, an end to discrimination, access to employment, and support for independent living are, as a disabled adult in the U.S., pretty much exactly what's on my agenda too.
And I didn't quite cry, but I did come close, a third time when I learned that the Obama transition team spoke with (not for!) autistic adults to learn what our hopes really are.
It is my hope that Obama follows through with his disabilities agenda, as stated. It is my hope that Obama continues to include autistic adults as direct consultants in all matters which directly affect the autistic population. It is my hope that the coming years will bring significant improvements to equality, quality of life, and true inclusion for all individuals on the autistic spectrum.
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Dora is committed to improving quality of life for individuals on the autistic spectrum--including herself! She is Co-director of the Academic Autistic Spectrum Partnership in Research and Education and a member of the Autistic Self Advocacy Network's Board of Directors.
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If anyone from that *other* www.change site is reading this, please note that my name is already in the hopper for a number of disability-related positions. Try and give it a look-see.
Posted by Mark Romoser on 01/20/2009 @ 10:57AM PT
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Hi Dora- I was curious when I clicked on "autism" as a cause what I would find- I was really hoping it wouldn't be upset parents wanting to eradicate autism. I was really happy when I read your post, not only about President Obama's agenda, but also that a person with autism wrote it. I'm going to forward this to my brother, Wally, who is a brilliant non-verbal autistic man. Thank you! Jen
Posted by Jen Wojtowicz on 01/20/2009 @ 11:45AM PT
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@Jen Wojtowicz, thank you so much for your kind words! It is indeed my hope for this site that it will be, at least in part, relevant to (and created with!) people on the spectrum themselves.
Posted by Dora Raymaker on 01/20/2009 @ 12:24PM PT
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Dearest Dora,
Nothing about us without us! Great job!
Posted by Elesia Ashkenazy on 01/20/2009 @ 12:28PM PT
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There's a LOT of things that need fixin', the economy, the war in Iraq, unemployment, but yeah, I'm hopeful that he's got people working on our cause too. I just saw his inauguration speech, and Everything looks rosier now!
Posted by Clay Adams on 01/20/2009 @ 12:29PM PT
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@Clay Adams, true, true. Something that gives me hope is that it sounds to me like these issues are being looked at *finally* as related to each other, not in isolation. And our cause seems still in the administration's scope: with glee I see that the disabilities agenda has moved to the white house! http://www.whitehouse.gov/agenda/disabilities/
Posted by Dora Raymaker on 01/20/2009 @ 12:46PM PT
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Please DON'T FORGET ABOUT ADULTS WITH DOWN SYNDROME. They have NO high-profile spokespeople. I guess it's not as fashionable as autism; perhaps less pleasant to look at? Seems that way to those of us who caretake our siblings with DS. I'm 53, a freelanced editor, uninsured, don't earn enough, and caretake my 43-yr-old DS brother. If I die, he's screwed.
We MUST get creative and progressive, and to that end, we should give grants to green builders to work with the families of DS'ers to build COHOUSING communities that would feature DS adults as their star residents, along with us so-called normal people. Regardless of whether Wonkette thinks they should've been aborted, they're here, and we LOVE them. Show your true liberal stripes and open your minds and HEARTS! Let's help those who are dependent on us through no fault of their own. That's TRUE liberalism.
Posted by Julianne Barbato on 01/23/2009 @ 03:49PM PT
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Dora--God bless you! You're doing GREAT!
Posted by Julianne Barbato on 01/23/2009 @ 03:51PM PT
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I have high hopes and feel autism will be a key issue as Obama so easliy could be a intelligent aspie, diffinatelly neurologically interesting anyway!
Posted by Alyson Bradley on 01/24/2009 @ 02:57AM PT
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@Alyson,
I learned something about him yesterday that I never knew before - I saw him signing a bill - left-handed ! At least, that's neurologically divergent, a different wiring of the brain from the majority.
Posted by Clay Adams on 01/24/2009 @ 10:22PM PT
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I visited the whitehouse site you posted and I'm happy he claims to be concerned and wanting to fix things, but as always, the children in between are left out. They are always talking about early detection and intensive intervention for toddlers. They are always speaking about adults. What about everyone in the middle? The education for children in school who are more affected is not what it needs to be. I wish they would do something about that. It would help my son live a more independent life when he gets to adulthood.
Posted by Dannene Drummond on 01/24/2009 @ 04:35AM PT
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I don't know why the Change.org email listed Equality and Inclusion and the link leads to a page on "autism". Autism is a label based on characteristics and needs. ALL people with disabilities face issues of equality and inclusion. All children and adults with developmental delays face similar issues and have similar, the same, or greater needs then people "labeled" with autism. To fight against stereotypes and discrimination, people should have their needs met, based on what they need as individuals, they should not be sorted, labeled and grouped into categories. This way the person with autism who has behavior and sensory issues and the person with a nueromuscular condition or other disabilities facing the same challenges will both have their needs considered and met. If there is not going to be a category addressing every label of disability, then it is more equitable to address issues based on needs of individuals. That way the person with autism has their needs addressed withing the scope of meeting everyone with similar needs and no one is left out.
Posted by Colleen Tomko on 01/24/2009 @ 06:40AM PT
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I couldn't agree more with Colleen Tomko. People need to be helped according to their "needs". Equality and Inclusion is needed for "ALL" people with special needs. Let's not start singling out individual disabilities. We have so much work to do in the area of disabilities, let's do it right the first time!
Posted by Alyce Sosnowski on 01/24/2009 @ 07:12AM PT
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People with disabilities have to learn to handle life themselves without too much pampering calling to their attention they are disabled. Many therefore have had a decent life. I speak from experience.
Posted by Otto VonAuchvetter on 01/24/2009 @ 08:14AM PT
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Bless your heart, Melvin! That you are able to even comment so articulately whereas my brother is incapable of surviving without a constant caretaker--since he has the mind and abilities of a toddler, even at 43--points up the need to include ALL children and adults with special needs.
We never "pampered" him, as you refer to it, but to get him even to the level he's at today required much effort, time, and focus. That he sports the shared features of those with Down syndrome naturally calls attention to his outward differences. That he is a loving, forgiving, and funny soul speaks to his similarities to, and maybe in some cases superiority over, the rest of us so-called normal people.
Posted by Julianne Barbato on 01/24/2009 @ 10:32AM PT
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I have a friend who works as a job coach at a sheltered workplace (wholesale plant nursery) and really appreciates the personalities and non-obvious talents of her clients with DS and other disabilities. She's taught me a lot about them.
All of her problems on the job are from the "normal" staff whose personalities are so much harder to deal with.
Posted by Kathryn Hedges on 01/24/2009 @ 10:41AM PT
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LOL--boy, do I ever appreciate what you've said! Big hug to your friend...and to YOU for even being interested in hearing about it and caring enough to share it.
Posted by Julianne Barbato on 01/24/2009 @ 10:51AM PT
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Ah, yes, those "normal" people, what to do about them!
thanks for the observation.
Posted by Kristina Chew on 01/24/2009 @ 11:00AM PT
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Autism Sunday is on 8th February many advocates have called on President Obama to speak up for autism on this day. How good it was to see Autism being given top priority on the White House website. It looks as if the President mean business where autism is concerned. Change has already come with autism given such a high profile on the White House website for the first time. Lets hope he speaks out on autism and reaches out to the Autism Community, that he will invite them to the White House and you are absolutely right he needs to include people with autism in the policy making process at every level. Wouldn't it be wonderful if the President appoints someone with autism or Asperger's Syndrome to work in the White House.! Now that would be real change.
Posted by Autism Sunday on 01/24/2009 @ 12:33PM PT
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I am a disabled worker now age 62 and so much i need of an outlet for what skills I do have. As I thought about how I have become sort of an expert or power computer user, having been troubleshooting PC problems for other by phone and in there apartments in my building it comes to me that although I may not be able to work and become self sufficient (not eligible for SSDI payments) maybe I could help others and defray some of the cost for maintaining my equipment and skills by charging them.
This lead to vocational rehab and a ticket to work program, connects with a SSDI payment counselor that I must report any income to and keep records, not yet shared with me thet what and how, obtain a business license for a home based business and complete W-9 to give to the businesses I might to some work. Now I am waiting for approcal from VR to accept me as a client for services and if so, a meeting with that counselor and a business development person. I must do a business plan and budget. This is getting so complicated that I feel defeated by this start up activity and the waiting now for action by VR.
In the meantime, I have a small business client that I have done some work for and now need to submit an invoice to get paid. I am so scared that this money is going to adversally affect my SSDI because as of now my 'ticket to work' has not been assigned to a 'network provider'.
I am presenting this and I can tell you that are more parts to it to emphasis how complicated and discouraging it is to attempt to work and to risk your benefits to make very small amounts of money. $400 over a 2 month period. I do not see how I can do anymore that the hours and schedule I did for this client of mine. Thsi work is so 'casual' that there needs to be another way to allow the disabled to do casual work (do definition needed of course) and avoid some or all of the issues involved in setting up a small business.
Our functioning and connection to the world around us would be so improved and as a result I beleive our health would be mor stable if not improve. This issue is more about a social need that can be met through casual work and volunteer work by our community.
I would like to see some changes to accomodate this situation and thereby encourage more disabled people to share their knowledge and skills. We are help the country to grow in small ways and part of that is to help ourselves become better participants in our community life.
Now, I am not autistic. I am however very challenged but have the capacity to contribute something in the form of work and volunteer services a few hours a week.
I may not be expressing myself well enough on this but I hope others might respond and help expand with their experiences and hopes for a freedom from boredom and exclusion this idea would serve to change for some of the disabled community.
Posted by Brenda Wiggins on 01/24/2009 @ 01:03PM PT
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