I'm often asked the question,
How does one really relate and react to a human being
who has a developmental disability?
And the answer to that question
is to look through the disability
and meet the human being.-a staff member at Camphill California--a community
where adults with developmental disabilities
live, learn and work together--as heard
in the YouTube video AbilitiesHas anyone seen this? Watch it and see what you think. Stick with it. You'll be wondering what is happening at the beginning and where it is going. You might think, "Is this what I can hope for (or should expect) for my child?" There are a few aspects of the video that were tough for me to sort through, and I think most people who watch the clip will have similar thoughts or questions (especially those who have children with a diagnosis).
Please watch, though. Wipe off your own glasses first, and leave your sensitivities behind. This video is a great start to the many conversations we should be having about abilities and how people with cognitive and developmental delays are perceived.
And the above quote from the video is perfect. I love the expression and intention of "looking through the disability to meet the human being"...
*Camphill California is a community where adults with developmental disabilities live, learn and work together. Residents have a variety of diagnoses including Down syndrome, Fragile X syndrome, autism spectrum disorders, and epilepsy.
To learn more about Camphill California visit: http://www.camphillca.org/
To learn more about The Camphill Movement visit: http://www.camphill.org/
Posts
All Feeling Better
12 years ago
Thank you for sharing this. I just watched the video. It's good for me to see, I think, even though it's not easy. I don't yet see my daughter's instrument as being defective. Maybe glimpses, but that's all.
ReplyDeleteThat's one of the parts I think people will have trouble with...the analogy to a broken instrument. But I think it was said with right intention--that challenges don't imply worthlessness, and that a diagnosis is not the most important part of a person--and he seems to have great respect and concern for the people at Camphill. I love that it is not a *facility*, but a *community*, with each member contributing to life there.
ReplyDeleteThe way I relate and meet individuals with a cognitive and/or developmental challenge is to see them as a person first, connecting with their true essence.
ReplyDeleteWe all have different abilities, we can always learn so much from each other.
Wow--- I have very mixed feelings.
ReplyDeleteClearly, the community itself is filled with love and friendship, yet,it saddens me to think that we still need self-contained anything--- classrooms, schools, communities. It defies my vision for my daughter. Certainly, she had T21, but why can't she be part of the larger community? I know she can be, and will be.
And, truthfully, I never "look through" her disability at all. It is part of who she is; part of what makes her unique and magical, just like her hair that is red some days and brown other ;-).
For me, she is not broken. I don't need to dance around the fact that she has an intellectual disability. She is whole and perfect as she is -~-~ it is society that feels the need to describe, box, categorize, separate, and "justify" her value that makes her life more difficult than for typically developing persons.
Ack....I've been long-winded...sorry :-).
I completely understand where you are coming from...and this is one of the reasons I posted the link, to get feedback from others.
ReplyDeleteI heard the phrase "looking through the disability" in the same spirit as seeing "the person first". For people who don't know how to react to someone with a disability or delay, the policy is a good one (to not let the diagnosis be a barrier in seeing an amazing and whole person).
We know the beauty of our children without having to take that extra step, but the reality is that many people do not. I feel like there are so many people who see Down syndrome first.
What I like about this video is that *all* the people at Camphill seem happy to be there, and the living arrangement & experience seems to benefit the typical residents as much as those with specific diagnoses.
If Bridget is not able to live independently, I'd have her with me, happily, forever. She may not feel the same way when she gets older, though :).
I don't know what the future holds for Bridget, or for us. I'd love for Bridget to be independent some day (and have no reason to believe she won't be), but I'm still early in the journey...and I have no idea how it will all play out. I'm in the phase of mulling it all over, trying to be realistic and hopeful at the same time. I don't want to close anything off to Bridget, or have expectations.
I don't see her as "broken" either. I do know that she has challenges that make some things more difficult for her. And unfortunately, to be part of the larger society, she will be judged and measured by those challenges at times...which just breaks my heart.
Above all, my wish for her is to be to be valued, loved and respected...
(On a side note, seeing you & Miss Magic take on the world has been such a joy for me.)
I watched it. I totally got it and respect and understand what the man meant when he talked about defective instruments. In fact, I like his analogy very much.
ReplyDeleteI also think you're dead-on when you relate the man's statement "seeing through the disability" to the special needs community's embracing person-first language. Yes, my son's disability is an integral part of who he is, yet he's so much more than that.
Thanks for posting this!
Oh, I see now that I wasn't clear. I hestitate to explain what I really meant...
ReplyDeleteBasically, I didn't have a problem with the analogy. My problem is more about how I see my daughter and how I can't imagine her grown up. I should elaborate about this in a post.