The Agony and the Ecstacy of Parenting a Child with Intensive Needs
by Dick Sobsey
This post is for parents of children or adults with MECP2 Duplication Syndrome but it is also for all parents of children or adults with intensive needs. It is about how having a child with intensive needs changes our lives so fundamentally… about how challenging and sometimes painful it makes our lives…. but also how it enriches our lives and makes our lives better in some ways. To read more: http://networkedblogs.com/NMw4h
[This post is the thirteenth in our series of Thinking in Action posts, the series being devoted initially at least to discussion of talks at the Cognitive Disability conference in NYC in September; this one takes up another concrete example concerning conference-themes, but not a conference talk. You can go to the Thinking in Action 10 pack, which links to the first 10 posts in the series; the posts run Tuesdays and Fridays, for the most part, and the series will wind up shortly. The posts immediately before this one concerned talks by Ian Hacking and Victoria McGeer on theory of mind and autism and Licia Carlson on moral authority].
I would like to raise some questions around the issue of whether Samantha is an ableist (for background, see the original post The son that Trent can never be …). While it is true that Samantha’s trip to China brought up feelings of loss about her son’s brain injury, she evidently feels guilty about those feelings of loss. What she said to Rob makes clear that she wants to value and appreciate her son the way he is. Indeed, her guilt about her sense of loss seems to stem precisely from the fact that she is committed to valuing her disabled son. In other words, her guilt seems to stem from anti-ableist commitments. For those who don’t want to go back to the original post, and the comments on it that have prompted this post, here’s the crucial bit of what she said about her brain-injured son Trent:
I found it rather hard to be around a baby boy who reminded me so much of Trent’s babyhood. It brought up a lot of feelings about Trent, and about the son that Trent can never be now. Maybe I still need to mourn the Trent that is now gone, but I feel guilty about mourning him, because he’s not dead. I guess I feel like if I mourn him it must mean that I don’t love and appreciate him enough the way he is now. I’m not quite sure what to do with all those feelings, but being around a baby boy sure brought them up. It’s going to be hard in some ways, I think, watching my nephew grow up to be a son I will not have now. What to do? . . . .
One might want to conclude that Samantha is an ableist from the bare fact of her sense of loss. Here, the reasoning would be that, if she weren’t an ableist, then she wouldn’t feel a sense of loss in the first place, so the very fact that she feels a sense of loss by itself shows that she does not properly value disabled people, or that she has prejudices against disabled people, including (now) her own son. Continue reading →
On October 23rd last year, the What Sorts Network, in conjunction with the Canadian Association for Community Living and the Alberta Association for Community Living, sponsored a public dialogue at the University of Alberta called
The Modern Pursuit of Human Perfection
Defining Who is Worthy of Life
The event began with a panel of people who talked about their experiences with children, doctors, families, and disability. There were then several short commentaries, followed by some open discussion. The event was free and open to the public, and we have videocasts of all parts of the event to share.
Over the next month or so, we will put the videos of the public dialogue up on the What Sorts blog; each runs for 5-10 minutes or so. Today Continue reading →