I sit merrily on the Spectrum, and am proud of my Asperger’s Syndrome diagnosis, as fresh as it is. I will also quite clearly state that I do not need an advocate, my voice, my opinions are solely my own and I have absolutely no problems in voicing concerns clearly and concisely. Neither do I view myself as disabled.
A diagnosis has not made me the person I am today, it has always been an instrumental part of me.
But what about individuals who cannot express an opinion? What about them? Who speaks for them?
There are a myraid of advocacy groups out there who will say they represent autistic people. Do they actually represent people on the spectrum? Or do we hear too much of the voices of their parents or people who have to talk over them.
We were recently lambasted by certain factions for saying that the words of Arthur Fleischmann came “straight from the horses mouth”. Ironic, as some of these people who seem “fit to judge” represent themselves as parents of autistic children whom they vocalise on behalf of (usually on twitter). This was Arthur Fleischmann’s first interview, and he was genuine enough to talk very candidly with us here. Of course we all want to hear directly from Carly, but since she is having trouble communicating who is best to translate what she means but her parents, siblings, and the people who have been around her all her life? Who do people believe is translating her Facebook page on her behalf?
Everyone is entitled to a voice
Everyone is entitled to make the decisions that are fundamentally important to their well-being especially when it comes to medical care, accommodation, and finances. But when do Autistic people actually need more help, and where is the intervention point?
One story that we wrote about last year regarding 44 year old Mark Wood from Oxfordshire, made me stop and think again. Mr Wood had his disability allowance cut to £44 per week, and decided to pay his gas bill rather than eat. He was a verbal, “low functioning” autistic. He died weighing 5st 8lbs. His GP Nicholas Wood told a recent tribunal:
“He was an extremely vulnerable and fragile individual who was coping with life.
“Something pushed him or affected him in the time before he died and the only thing I can put my finger on is the pressure he felt he was under when his benefits were removed.”
I strongly feel that Mr Wood although verbal and able to communicate could have done with the help of an advocate. If someone, anyone, would have intervened he would be here now. There are thousands of stories like this annually. Vulnerable people who perhaps need extra support and gentle guidance. Even neurotypicals struggle with decision making especially when they’re the big life choices that can shape the future.
What about children? The legal age for decision making is unclear, and possibly another point for debate. Minors are just that until they hit 18, or 21 in some countries. I have absolutely no shame in confessing that I make decisions regarding my autistic son. His schooling, his GP, any treatments that he may require are all my decisions, although at seven, he is able to now voice a preference which is taken into account quite seriously before making an ultimate decision.
Are parents the best advocates? The person who has spent most time with the child? Should it be teachers? Therapists? Or is the child themselves capable of making monumental decisions of huge responsibility at a very early age?
I mentioned advocacy, I was lucky enough to have a chat with Ari Ne’eman from ASAN (Autistic Self Advocacy Network) recently. I love ASAN’s all out, take no prisoners approach to self advocacy. Their view?
“Self advocacy begins by understanding that rights are never granted from above. They are grasped from below by those with the courage and determination to seize that to which they are entitled.”
Mr Ne’eman said:
“The Autistic Self Advocacy Network has always viewed autism as a disability and autistic people as part of the disability community. In fact, one of our earliest successful legislative priorities was the passage of the ADA Amendments Act, which ensured that the definition of disability under the ADA would be interpreted broadly, as would its civil rights protections. We worked to ensure that autism would be included within that definition and followed up with respect to the Employment Equal Opportunity Commission’s regulations implementing the legislation to discuss the inclusion of autism within the ADA’s definition of disability.
Our website has comprehensive information on our prior advocacy work, including ample instances in which we have clearly presented our work as within the context of the disability rights movement and the scope of disability policy. While we do not view autism as a disease to be cured, we do view it as a disability and have always incorporated close collaboration with the broader disability community in our advocacy.”
I asked Mr Ne’eman who should advocate for those unable to advocate for themselves. At publication of this piece I am still awaiting an answer- an update will be printed when he responds as I’m faithful he will.
I’d like to thank him for his contribution to this article and for the chance to learn more about ASAN.
It seems that advocacy is a very grey area, personally it makes sense that those who are for some reason incapable of making their own decisions, voicing their opinions should be given a voice. But how? And when advocates become involved, it’s a catch 22, that an individual is being spoken over?
When did we lose our voices? And when did we lose reason on when people actually need assistance?