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Sunday, 10 June 2012

"My Special Needs Child is Not a Burden on Society" - Love that EllenSeidman!

I found a lovely post on Friday at http://www.lovethatmax.com, a blog by Ellen Seidman about life with her son Max. Max has cerebral palsy. He had a stroke just after he was born. I'm devouring Ellen Seidman's blog, and it's partly why I posted the blog that I did on Friday. That, and a discussion with Geoff that happened that same night. It had all got me thinking about things like equality, and opportunity, and contribution to society...and left me thoroughly muddled. Perhaps that's why I didn't sleep Thursday night.

(Geoff, if you'll remember, is my Conservative Facebook friend with whom I argue politics. We've started to joke that if we agree on something, pigs must be flying somewhere. We did have a good discussion the other night, though, tempered by the influence of other Facebook friends much more intelligent than I am.)

Ellen Seidman has read this post and approved it. It was important to me that she did.

Burden to Society? Depends On How We Choose to View Max, Not His Ability Level. You Go, Ellen Seidman!


Ellen Seidman's June 6 post, "My Child With Special Needs Is Not a Burden To Society", talks about a perception that because Max's needs are greater than those of some other children with disabilities, he'll therefore make less of a contribution to society, and money to support him would be "better spent" on children with less severe disabilities who will make a "greater" contribution to society. A number of other parents commented that they've encountered the same attitudes about their children with disabilities. Ellen Seidman and the commenters got very emotional.

I can understand why. One of the things that's annoyed me most as I've worked with people with disabilities is hearing from other people (sometimes in front of the person with whom I've been working, and sometimes from colleagues in the field) statements like:

  • "He'll never do that. His disabilities are too severe."

  • "She'll never be able to do that. It's too much for her to handle."

  • "What's the point of trying that? It's too expensive/there's not enough support/we need things that we don't have ."

  • "That'd be too hard for her. We don't want to set her up for failure."

Usually, the comment on the tip of my tongue is, "Unless you've got a crystal ball that I don't know about, you can't see into the future to know what this person is and isn't going to be able to do in life, and what contribution to society this person will make."  I generally tone it down to,

  • "No one is ever going to know what he's able to do, including him, if no one ever gives him a chance to try."

  • "It'll be a challenge, yes, but we'll get a good plan together for her before we move forward with anything."

  • "The point in trying is that he wants to try. It's his dream; everyone has the right to a dream. Let's assume that the resources are available and see how far we can get."

  • "What's the worst case scenario if she fails? She learns how to deal with failure. Everybody has to learn how to do that eventually."


What Does "Contribution to Society" Have to Do With "Equality"?


So, last Thursday night, Geoff and Julie and I debated what "equality" meant when it came to people with disabilities. I got it down to "equal opportunity", which thoroughly confused Geoff (and with good reason, as I was thinking of this graphic and substituting "equal" for "Fair" in my mind):



But I worked it out. I won't go into the protracted train of thought that led there, especially after reading Ellen Seidman's blog,  but it all became to me Friday when I was writing on tumblr:




"I’ve been thinking about this quote:  ”Fair isn’t everybody getting the same thing…fair is everyone getting what they need to succeed.”

But there’s an implication there that not everyone is equal. 

Maybe everyone is equal in that we’re all equally deserving of fair treatment?

Glad I worked that out…only took me all day…"

It'd be such a cool world if we could get it through our heads that everyone, regardless of ability level (or race, or gender, or sexual preference, or religion...you get the picture) is equally deserving of what they need to become what they consider successful (within limits, of course. I don't think that society could in good conscience support people to become successful ax murderers).

But that's not my point. I'm trying to say that even the people who look the least "successful" in society's eyes still make a contribution to society in all sorts of ways and may be quite happy in life. So social support can't be reserved for who has the potential to make the greatest contribution to society. If we're truly all equal, we should truly be regarded as having limitless potential and the advantage of government systems that nurture it.

I'm looking forward to seeing how Max continues to contribute to society as he grows up. I hope that Ellen Seidman will keep blogging so that we can continue with her family on their journey. Do yourself a favour and go read the "My Child with Special Needs is Not a Burden to Society" post on Ellen Seidman's blog: http://www.lovethatmax.com/2012/06/my-child-with-special-needs-is-not.html

What's your greatest contribution to society?

4 comments:

  1. Yep, Ellen is definitely a positive powerhouse of a blogging mama! She's done a lot of good, I think, especially with and for mothers who are completely lost and new in this realm.

    I really enjoyed following YOUR comments along the blog hop trail!  I think you said everything I would like to, if I was able to articulate as well as you do. :)

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  2. You are *very* articulate! And I'm loving the blog hop...I'm glad that you think my comments are useful. I don't know much about early intervention strategies for Down's Syndrome, but I'm certainly learning a lot, and finding great new blogs to follow. :)

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  3. Wow! Great post - I found you through the special needs blog hop and I am really glad you joined up.

    I love hearing voices outside the Down syndrome world. Will definitely be following along with your blog!

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  4. Thank you, Melissa! I am learning so much through the blog hop. And there are quite a few posts about Down's Syndrome on here - I'll try to put a list of them together, to make them easier to find. Glad you found your way here!

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