Tuesday, February 27, 2018

That dream about your child where he's standing up for himself


My dream of independence for Max contains many dreams—that someday, he'll dress himself, prepare meals for himself, make plans for himself, get himself places. The list goes on. Whatever level of independence he achieves, I'll be grateful for, I know. Yet as Max has gotten older, I've had a new independence dream for him: one about him owning his disability and standing up for his rights as a person with disabilities (PWD).

Yesterday, Time posted an excellent article by Abigail Abrams on the momentum the disability rights movement has been gaining, in part sparked by attempts to repeal the Affordable Care Act; it included cuts to Medicaid, the main health insurer for children and adults with disabilities. Disability activism has certainly been around, but there's new urgency. As longtime disability activist Anita Cameron said, "It's far more intense. We really feel our lives are at stake."

People in the disability community around the country staged protests in the face of the potential repeal of the ACA. Some 45,000 people with disability attended the Women's March on Washington last year—making it, the article notes, the largest gathering of disabled people in U.S. history. Since 2016, the #CripTheVote campaign started by activists Andrew Pulrang, Alice Wong and Gregg Beratan has encouraged PWD to get politically involved. The larger chapters of the disability-rights organization ADAPT have seen surges in membership.

I have no idea how Max might someday pave the way for himself or, as the case may be, other people with disabilities. I do know that he's good at making his needs and opinions known (insert parental eye roll here), traits that are key for advocacy. Should a program refuse to let Max join, say, I'd like for him to take them to task. While part of me would like to forever shield my boy from the stigma, prejudice and exclusion that exists, I realize that I won't always be here to fight for him—and that learning to recognize when he's been wronged and fight for himself will be a tremendous asset.

Becoming a self-advocate role means taking pride in who you are, another focus for the disability community. They'd like people to see their disabilities as key to their identities as race, ethnicity and sexual orientation are. While I'm not exactly sure how to raise an advocate, I do my best to boost Max's confidence and self-worth, same as with my other children. I praise his abilities. When he gets frustrated by his challenges, I acknowledge how he feels, applaud his work-arounds, make suggestions and figure out adaptive solutions. We have ongoing discussion about what it means to have cerebral palsy. I talk about his dreams for the future, and how he might be able to achieve them. I hope to connect him with adults with disabilities he can hang with, so they can serve as role models.

When Max was little, I was laser-focused on getting him to do stuff—take a step, pick up a ball, grasp a spoon, say a sound. The truth is, there will always be everyday things that my boy won't be able to easily do or do at all, because his muscles won't bend to his will. That's why there's one development that's just as important to coax along as the physical kind: the progression of his disability pride.

8 comments:

  1. Ellen, by teaching Max to be proud of who he is and to embrace his cerebral palsy as part of him, you are teaching him to be an advocate. but more importantly by advocating for him and having him see you do so, he's seeing what an advocate looks like. He's seeing how you advocate for him and someday he will take that over himself in some capacity, knowing you always have his back. Also I think in a way the progression of disability pride happens naturally, I know for me it has and since I've been at college I've definitely been louder about not only advocating for myself but for the inclusion of disability in diversity initiatives (which happened).

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    1. Thanks, Kathryn. This is heartening to hear.

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  2. Have you seen the Love Over Bias Olympic ad? It has people of colour, a gay skater, a Muslim and... an adorable little boy with a prosthetic! They are all shown in an equal way, too. Showing it to your kids and asking what they think of it might be a good jumping off point for exactly what you’re talking about.

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    1. I just watched it. Amazing. And agreed, a great conversation starter—thanks, Isaac!

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  3. I'm so glad you wrote about the Time article Ellen. And thank you for sharing your thoughts on Max's possible future as an advocate. I don't think there's a surefire formula for raising a disability self-advocate or activist. I do think that to some extent is has to happen organically ... when the person comes to their own conclusions about disability and how to negotiate with it in society. That said, there are resources on developing advocacy skills from most disability organizations and relevant to all kinds of disabilities.

    By the way, a small correction: #CripTheVote is organized by 3 people, myself, Alice Wong, and also Gregg Beratan.

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    1. My pleasure to write about this—I thought it was a great piece, and glad to see your name in there. I added Gregg's name above! I think, right now, Max needs to better understand his CP before advocacy could even be a thing. I know that letting a child make choices is one way to instill that "Yes, I have control" sense, and I'll check out other tactics—is there one organization in particular that has good tips you can recommend?

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    2. I don't know if it is represented by a single national organization, but broadly speaking the "Self Advocacy" model, when done properly and not in a perfunctory way, is designed to foster self-advocacy skills specifically in people with intellectual disabilities.

      And since one of your commenters above recommended a video, I'll recommend the recent "Drunk History" segment on the Section 504 sit-ins. It's very funny, but also accurately informative about one of the first major disability activist campaigns. https://youtu.be/kzgpPsAQdjQ

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  4. I'm not sure understanding CP itself would be as important to Max' self-advocacy as understanding himself and his rights. One thing I've learned as part of the disability community is that the specific diagnosis/disability is often less important than the general experience of disability. Outside of accessing specific medical care, my diagnosis of CP is less important than my need for accessible spaces or my need for typing instead of handwriting. And I share those needs with many people with other disabilities, and don't share those needs with everyone else with CP.

    Two crucial pieces of advocacy for a kid, I think, are "I can do this" (when others think I can't, even if I do it differently) and "I can't do this" (at least, not without adaptations or assistance or accommodations, and this is the accommodations or assistance I need.) Max doesn't need to understand a lot about CP to learn how to ask for help when he needs it or refuse it when he doesn't. And most importantly, to understand the idea that he has rights to go places and participate in activities.

    My favorite book about self-advocacy comes from the autism world, "Ask and Tell." My most used idea from the book is the idea of partial disclosure. Often, a person can disclose their specific need in a situation, without having to go into explanations and diagnosis.

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Thanks for sharing!



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