Friday, December 28, 2012

In Response to John Best


This is my  response to John Best.  The parent of a child with autism, who has decided to attack my colleague in the movement Ari Ne'eman, by calling him a fraud because of his perspective that autism doesn't needing curing, but is just part of the spectrum of humanity.  I am not autistic, but felt I had much to say on the subject of seeking cures for children with disabilities. 

Mr. Best has not substantially responded to me, accept to inform me after reading this post as follows: "I don't think you understand how debilitating autism is. Kids like my son can't do anything for themselves."  I was horrified.  The idea that a parent would think any child,  whether or not that child has an impairment, "can't do anything" is patently wrong.  It's especially a dangerous precedent to set in regards to a child with a disabilities, who are more likely than other children to have this negativity reenforced by society.

There is a petition on Facebook to ban Mr. Best from Facebook and remove the two pages that many people with autism object to.  The petition can be found by clicking here.  I signed it, even though I'm a big fan of the first amendment.  I did so because I feel that this 'cure me, whatever the cost ideology', is dangerous to children with disabilities of all kinds.  I also worry that a misguided person, under the influence of this sort of thinking, may target Ari or others with autism for acts of violence.

I wonder if your son is what some refer to as "low" functioning. Ari is "high" functioning.  This may be the cause of your difference in perspective in reference to them.   Both of them have autism, just different ends of the spectrum. I, myself, have "medium" cerebral palsy.   For the record, I also am not particularly clear on what such functional labels are meant to convey.

In terms of  my own experience I can tell you what having cerebral palsy has meant to me. It doesn't mean I'm not a person. It doesn't mean I'm not a poet. It doesn't mean I'm not capable.

In fact, I would say that having cerebral palsy had informed and influenced both my writing and my activism. I would not be the person I am today had I not been born with this neurological impairment. It's the fact that I would not be the same person if I were white or male. I currently have a job as a freelancer covering disability issues an  Internet publication. You can click on my Facebook profile to be linked to my work.

I currently live in my own apartment. I interact with others on a daily basis. I have a mentee. Granted, having cerebral palsy is at times difficult. This is mostly because of outdated social attitudes and the 
funding structures that control the services I need to survive.

However, if I had a magic lamp I would not wish away my cerebral palsy. I would wish away all those barriers that make living with it so difficult and are so unnecessary. I would also wish away all those damaging and incorrect physicians, therapists and others who, instead of teaching the child me to accept her disability and learn to function with it spent countless, pointless hours trying to make my body do things it was simply never meant to do.

If I could go back in time I would tell my parents that while I know they were doing the best they could in a situation they were not prepared for they shouldn't spend day after day and dollar after dollar chasing a cure that didn't exist. Instead, I would urge them to spend that time and that money moving to a more functional  house, saving for my college, and making sure I got the mentorship and training I needed to become an independent woman with a disability.

I can almost assure you that your son has similar wishes to me now that I'm an adult. Most people with disabilities will tell you that they wish their parents had focused the effort and money they devoted to curing their impairment on teaching them how to live with one. I hope my letter helps you redirect your focus and parent, rather than try to fix, your son. If it does, you will have a lot fewer awkward conversations when he's an adult.

5 comments:

  1. Bravo Martina!
    Your message is loud and clear. It is something that needs to be heard by so many of us.
    Thank you.
    Ronnie Raymond

    ReplyDelete
  2. Thank you for writing this! People with disabilities don't need a cure and parents need to be better informed on what their children are capable of doing

    ReplyDelete
  3. I am not to concerned over what John Best writes, because it is free speech. I find it obvious that John Best is still in the process of figuring the world out. I am very concerned about expensive speech.
    Like this:Roy Q. Sanders, M.D. wrote "Teaching empathy to someone with autism/Asperger’s is almost like teaching a pig to sing – it is a waste of time and annoys the pig"
    This site is paid for with money that was donated to help us. Can we get this site taken down?
    http://blog.autismspeaks.org/2011/04/20/experts-reflect-on-parenthood-finale/
    I am calling on the Autism community for help, I am starting an organized effort to observe Autism $peaks propaganda. Please send me a Facebook message if you are interested.

    ReplyDelete
  4. Replies
    1. Apparently, he's parent of a kid with autism who has a hate on for every autistic who has a life with their autism instead of spending every waking moment in search of a cure.

      Delete