Endangered…?

Standard

Some geneticists are busy looking at parts of chromosomes 7 and 21 for a connection to so-called regressive autism. I’m still dubious about it being that simple, given that there are many possible causes for the things being dubbed ‘regression’. But if these are truly the main genes involved in this expression, then they’re probably talking about me: I lost prior speech abilities in early childhood and have lost a number of other abilities (including the speech I’d regained) later in life.

Meanwhile, the push is getting greater to detect autistic people before we’re born, so that we don’t have to be born. Eugenic abortion — as one person put it not the right to choose whether, but the right to choose who — is already so commonplace towards people with Down’s syndrome that one activist with Down’s syndrome, Astra Milberg, has commented that she feels like one of an endangered species, and several activists with Down’s syndrome protested at an international genetic screening conference for their right to speak out against this a few years ago.

I wish I could say I felt much of anything, but I’m more sort of numb. I know exactly where things are headed, and I will work as hard as I can to stop them just as I have been all along for people who already peg some people’s “don’t even get a chance at life” meters, but I guess I got the strong freaked-out emotions out of the way when I saw where this was going years ago. It’s just… weird… to know they’re getting this close to identifying the genes, and that they’re zeroing in on subtypes that sound suspiciously like mine.

About Mel Baggs

Hufflepuff. Came from the redwoods. Crochet or otherwise create constantly and compulsively. Write poetry and paint when I can. Physically and cognitively disabled. Anything you hear in the media or gossip is likely to be oversimplified at best and wildly inaccurate at worst, the only way to get to know me is to actually know me. I'm not really part of any online faction or another, even ones that claim me as a member. The thing in the world most important to me is having love and compassion for other people, although I don't always measure up to my own standards there by a longshot. And individual specific actions and situations and contexts matter a lot more to me than broadly-spoken abstract words and ideas about a topic. My father died a couple years ago and that has changed my life a lot in ways that are still evolving, but I wear a lot of his clothes and hats every day since he died and have shown no sign of stopping soon.

4 responses »

  1. well!! This is the strangest kind of blog I have ever come across. I would like to know more about this topic so keep posting here otherwise send me newsletters in kingxyz@indiatimes.com
    the topic you had mentioned is really new to me but what ever I got through it is life threatening. It shivers my nerves. There is always a good and a bad side of everything but this one particularly should be taken care by government and the practice of such thing should be licensed or if I better mean banned because in human being “survival of the toughest” doesn’t apply. Look at the example of Stefen Hawkins the so-called great scientist he to won’t be present today if that is the case.

    Larisa
    as Don Lapre is da Man
    larisa@larisajoyreilly.com
    http://www.larisajoyreilly.com

  2. Dear Amanda:

    I’ve just linked over from one of your videos and have been reading your blog. I’ve taken a moment to note what I’m doing: my face is pushed close to the screen, my eyes are reading tenaciously, my pulse is quick, and I’m 22 minutes late for my 5 o’clock class.

    Make that 23 minutes. I want to write much more but must leave soon to face a cantankerous and wonderful fossil of a professor.

    I feel a common spirit with you and with every being living in this misunderstanding and odd society. I have always been not-exactly-normal: I was diagnosed with ADHD at 8, am gay, have transferred from college to college to college, am Quaker, am a boy who writes poems, etc. I feel often that I have been trained (by social protocol and parental expectation) not to do things that I desperately love and must do. I have been called “stubborn” and “odd” for this.

    There is no eloquence of words sufficient to transcribe the kindling light of joy and love that rose up in my heart when I heard you.

    Pax,

    Ian

  3. I suppose it’s especially worrying since regressive autism is the type most often vilified and sensationalized as a ‘tragedy’.
    Hey, maybe if the mercury-autism folks can keep enough scientists busy trying to shut them up, they might actually do us a favor that way.

  4. Hi Amanda,
    I have been watching your videos for a couple of years now. I have used your, “In My Language” video many times in training volunteers who come to work at our camps for people with disabilities, Joni and Friends Family Retreats. Just over the past few weeks, I really feel as though the Lord has downloaded a book idea. I heard it said at one of our camps by a mother, “My daughter has Down Syndrome but her spirit does not.” Most people have never even considered this concept! Babies are being aborted simply because they do not fit the norm??? I am in the process of putting stories together based on the lives of our campers and the impact that they have made on the lives of others. Each and every one of us has been given the capacity for a relationship with God, therefore we all have spiritual gifts that can contribute to the lives of others if given the chance. The book is all based on the lives of our campers so that the proceeds can go back into camp, otherwise I would be asking to share your story! But I really feel that this will also lead into a website to share stories and give support to families touched by disability. I can’t even begin to tell you how your video has helped bring understanding to our volunteers. It has thrilled my heart to see people entering into the world of our kids with autism rather than forcing them into ours. My brother spent three hours in the pool every day with an 18 year old young man this summer pulling him around underwater so that he could, “swim in space” as he described it. My brother is a water polo coach and after this experience, he received a phone call from a mother asking if her autistic son could try out for the water polo team, his answer, “Of course, not only can he try out, he can be on the team!”
    So, you are changing the world, Amanda and I thank you for your willingness to be vulnerable. If you think about it, pray for this book to make it into print, I am praying that it truly will save lives. Best wishes to you!

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s