On Combating Hate Against A Cure

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On Combating Hate Against A Cure

Open Letter,

Hatred against the right to cure research and the potential right to receive a cure has been noticable in recent years. We are called people that want pity, people that have our mothers go around town to make others feel sorry for us and that our disabilities are simply differences and to think otherwise according to some is bigotry. Meanwhile our parents, grandparents, friends and supporters are called bigots by special interest groups in protests such as the Autistic Self-Advocacy Network (ASAN). People who have very high functioning forms of autism that believe they have the right to force their beliefs on others or else we hate ourselves and them.

Adversity has gotten so bad that people have stood up to them. Yet they continue to act as if they are the victims and are simply being bullied. A time comes that in spite of their and others horrible emotional treatment of individuals seeking a cure for difficulties that people with autism themselves need to stand up to them. I myself am a public advocate with autism from Humboldt county California. My desire is to seek an end to any potential evasion of the human right to choose treatments with remedy for advsere symtoms. To have the dignity to make that private choice, for it to remain private and protected by the law including civil rights law. I am also calling out the board of ASAN and of whom happen to have a company name which implies a diversity of opinions are catered to in the autism self-advocacy community known as the Autistic Self-Advocacy Network. I seek to have them answer questions with regards to my and others human and civil rights.

Nathan Young
Autism Self-Advocate
Community Inclusion Leadership
Humboldt County, CA
1-888-241-6856 ext. 701

Do you really want a cure ? Why don't we cure Thomas Edison who's teacher complained that he asked too many stupid questions therefore he was unteachable. Yes if Edison were neurotypical he would have saved himself a lot of humiliation but it was his inquisitive mind that gained him immortalitywhereas his peers have long since been forgotten. Rather than a cure would it not make more sense to seek accomadations. Why couldn't the teacher of Edision take the extra time and try to answer Edisons questions rather than just bully him.

You may argue that Edision was high functioning so his case does not apply to you. On the contrary there are a whole range of assitive technology devices that could be invented.

Christopher Reeve was a perfect example of a cureabee. He longed for his body to be restored back to normal. Had Christopher Reeve embraced robotic technology he could have been up and running again but he would have been a freak.

A cure is impossible for autism because the whole brain would have to be rewired.

You used comparisons to people that are not proven to have autism and speculations about a potential cure as if it is impossible. No one knows what medical science will develop nor is it impossible to work with the diversity that already exists innately to entirely remedy or simply improve difficulty. To perceive cure as an absolute toward the self as if to deny self from being who one is I think may be wrong but still yet is a personal belief. Cure is for difficulties one experiences and so depending on the person and severity the cure concept would be implied differently. I also don't think cure would mean the same for each individual and so cures for different symptoms when they do hinder life is more appropriate. Asking to many questions may be annoying to others and I do it all the time and ask the same questions many times because I forget. Still yet the right to cure is personal choice.

Nathan, please redraft so that A) you make your meaning clear and B) remedy the numerous grammar errors in this "open letter".

Thanks!

Oh quite it you butt.

hasnt this been disgused about 1,000,000,000,000,000,000,000 times.you would have to re calculate einsteins theory of relitivity to calculate the actual number of times this topic has been discussed on this forum

Yes but the goal of the letter is to discuss it with the ASAN board. It's just a advocacy statement. I don't mind repeating the general rationality of human rights choices if it helps protect those rights.

what about cure as a personal choice,no one denied it and no one forced to take it.and it can only be forced on someone totaly non verbal only after extensive evaluation by psychiatric team of doctors concludes that it benifits a person beyond a reasonable doubt

Ci, I couldn't agree more.

I think the trouble is though, people don't know the difference between them and their autism/AS, thus they have this fear that the train would go right off the tracks, that they'd be completely turned from this trendy intelligent emo or subculture kid into something very vanilla and Stepford'ish. To undo a neurochemical or genetic shortfall is to give the brain tools, not to pound and reforge a square peg into a round one (that and - the parts of themselves that they love and stridently believe society wants to take from them, they haven't gotten to know enough NT's who have this themselves).

The point is, if you have at least twenty years of experience being you, you likely aren't going to forget who you are all that much if things all of a sudden get easier. Prior autistics would likely be the most firm, polished, and poised people in the world at that point once the half-ton weight gets lifted off our shoulders. As for the scare of whether a three year old should be cured and the horrors of just how divergent their path will be if they're cured from if they aren't and the difference in who they'll be in the end - one might as well contemplate that about an NT child who hasn't had their ankle run over by a car. IMO, in the end its all just a big mirage - people don't know how something works, they're afraid that it may be pushed at them, and they end up assuming that their souls will be stolen and sold in bottles.

That said, while I really want to entitle people to their own opinions or their right to think whatever they want to think about reality - even choose to believe miasma theory of disease if they really want, there's a point where that's injurious to other people's lives and where they're fantasies start stepping on the liberties of others.

ASAN actively supports quality of life-oriented research, ie. research that aims to help persons mitigate their challenges and communicate and function better on a day-to-day basis. What they don't support, primarily, is the development of prenatal testing and treatments that are unproven scientifically to work and be safe. As an adult in the here-and-now who wants to live her best life possible, rather than a fetus with a death wish or someone who wants to be a human guinea pig for any snakeoil treatment a well-meaning family member might find on the Internet to try out on me, I find some common ground with them.



If you haven't already, why don't you just go to their website and email them? You have a right to voice your opinions and that might be a better way to create a dialogue. If you did try contacting them and they didn't respond, then I don't blame you for being angry.

As far as "stepping on the liberties of others," ASAN takes a civil rights-oriented approach to their advocacy that is not seen much otherwise in the autism community. If you look at the broader disability rights movement and disability history, there is not much that is different about ASAN's approach from that of an organization like ADAPT and, IMO, that's a big part of why Ari is so well-accepted in the broader disability community.

I work in disability services and am saddened at how far behind we are in the areas of workplace accomodations/employment, general understanding and acceptance and community supports when compared to, say, persons with physical challenges. Their public policy work is challenging this and attempting to protect your "liberties." Working towards seeing more people with ASD educated about their rights and and feeling whole enough to stand up for them is not the same as saying everything is okay or viewing the world with rose-colored glasses; it's more like finally standing up to the schoolyard bully and doing what's right, even if that takes a hell of a lot of courage.

I may not always agree with the way in which they go about doing things, but as someone who works in disability services, I can say that advocacy is a lot harder than it looks, especially when you have to practice it within a hostile system and with a chip on your shoulder from a lifetime of getting the proverbial short end of the stick, plus you have challenges reading and interacting with people. It's easy (and this isn't pointed so much at you Techstep, as it is a broad generalization I'm making while getting swept away on my own rant) to criticize what any organization is doing and often a lot harder to get out and actually attempt doing a better job.

The Republican and the Democrat has their civil rights. In America the communist and socialist have their civil rights. Even the despised have their civil rights like neo-Nazi's. Civil rights may be represented in all sorts of ways and to enact these rights in the form of platform to enable it is honorable. However if it is divisive and intolerant of others views and caters to only a certain political agenda it is a special interest enabled by civil rights laws. It is my belief ASAN has gone in a certain direction politically while leaving out fair say of different views within the self-advocacy community. Whilst currently it's current political manifestations have threatened progress because of conflict of interest and incompatible politics merged together formulating an awfully bad set of expressions toward the mainstream public. It is only by means of outlining the concerns publicly on a major autism self-advocacy social website like this that it might be corrected.

I will type again very soon in this topic as I am working on business writing.

I do understand your concerns about inclusiveness. Personally, I feel that way about most autism organizations. A lot more could be accomplished if less energy were spent on bickering, but people with very different, but passionately-held views are just going to clash a bit, I guess.



Please elaborate on this with specific examples, so I can better understand what you're referring to.



I guess it can't really hurt, but it may not be as effective as you'd like unless the people to whom you're addressing it happen to stumble upon it and read it.

Last edited by blueroses on 01 Jul 2011, 9:48 pm, edited 1 time in total.

Let's just say it's effective enough to have already caused an effect without much effort. ASAN won't have a choice in the matter. Evidence shows clearly the bias, conflict of interest and evidence is clear as day. They will have to either include others or effectively be rendered useless as an organization.

Will be back later this evening.

Yeah, truthfully I don't know enough about ASAN to have an opinion one way or another. I was really just giving my thoughts on the cure issue.

I think likely any organization big enough will spread in a lot of directions and do some good, some bad based on how many different leaders there are or how much the organization has infighting on its values and objectives.

Last edited by techstepgenr8tion on 02 Jul 2011, 9:38 pm, edited 2 times in total.

Are you referring to a particular grant they've received? Ari's NCD appointment? I'm just hoping for clarification since that is a pretty strong accusation and I guess I need you to draw me a diagram or something.

Last edited by blueroses on 01 Jul 2011, 10:16 pm, edited 1 time in total.