The Many Faces of Disability and Difference


Over the last four years, I’ve become very entrenched in the Down syndrome community – at least online.  Having a child with Down syndrome will do that to you – make you want to seek out other parents who are dealing with similar issues, experiencing similar feelings, fighting a similar fight to change how the world views their children and people like them, to demand respect, compassion, and appropriate opportunities for their children.  And when you have a child with Down syndrome, it’s easy to feel, on some unconscious level, that Down syndrome is THE disability that needs the most advocating, the most focus, the most energy.  Down syndrome is our reality; all other realities, I think, slip past our radar to a large degree.

This isn’t a judgment, just an observation – something I’ve become more aware of lately.

I recently began to become acquainted with a neighbor who has a teenage daughter with Rett syndrome.  I also have a friend who has a daughter with Wolf-Hirschhorn syndrome.  I know another woman who has a child with Williams syndrome.  When my twins were in preschool, one of the children in their class was a little girl with Prader-Willi syndrome.  I know someone who lost a baby to Edwards syndrome.  (I’m not making this up – I really have crossed paths with all these people.  That’s a lotta syndromes.)  Then there are all the people I know who have children with autism.  Michael and I have adult friends who are deaf.

There are A LOT of disabilities out there.  Although it’s easy to feel as though Down syndrome deserves the most focus, the most funding for research and services, the most advocacy (not that I think any of us think that on a conscious level), it’s really humbling to know that there are millions and millions of other parents out there with kids with all kinds of other issues – and you know what?  They’re all fighting the same fight we parents of kids with Ds are fighting.  We all want our kids to grow up in a world that treats them with dignity and compassion, we all want the best opportunities and the best medical treatment for our kids, we all want more funding for research for our kids’ particular conditions, we all want to do away with stereotypes, we all often feel bewildered by it all, and ultimately feel changed by having our children and their disabilities.  As big as the Down syndrome blogging community is, I bet there are blogging and other online  communities just as passionate and just as active among families touched by Rett syndrome, autism, deafness, and the like.  And if you go to any of the national websites for any of those syndromes or disorders, you will find many similarities to what you see on the national Down syndrome sites: information for new parents, photos of children with the disorder, lists of resources, information about conventions, and so forth.

I’m not really sure what I’m getting at.  Except to say that it’s a big, wide world out there, and none of us are alone.

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3 Comments on “The Many Faces of Disability and Difference”

  1. Ellen
    August 3, 2012 at 10:17 pm #

    Interesting post, Lisa. I’ve been a DS mom for 7 years but have a son with Asperger Syndrome who is 21. It has been interesting to note the differences and similarities among the groups of parents I’ve encountered over the years. We have in common that we are trying to do the best we can for these kids that we love.

  2. Jen @ Born Just Right
    August 5, 2012 at 12:58 am #

    I totally agree. We are in a world where parents of special needs can really lean on each other… no matter the diagnosis. It’s totally worth reminding ourselves from time to time how we may be dealing with different challenges, but it’s kind of also the same!

  3. Rebekka K. Steg
    August 13, 2012 at 11:28 am #

    It is definitely true that we fight for what we know about. I have several topics important to me, I grew up with a dad who had Asperger’s (although he wasn’t diagnosed until a year before he died). He died from lung cancer when I was 17. My grandmother died from breast cancer. My mum has suffers from chronic headaches and depression. I have endometriosis, and both my sister and I had atopic eczema. A friend of mine was abused as a child and today has the Borderline diagnosis.

    It’s hard to say that one case is more “worthy” than another, but it’s also impossible to focus on and be aware of everything.

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