Creating an ordinary life for an extraordinary person

 

Do you know about the TED talks? I discovered them several years ago and find them an endless source of inspiration and challenging ideas. The talk featured in this post (and at this link) is one of the best I’ve seen.

Sally Richards is the mom of Jackson. Sally introduces Jackson in the words others have used to describe him, “profoundly intellectually disabled” and “a burden.” Then, Sally explains how Jackson is an extraordinary person who she wanted to have an ordinary life, and how she went about making that happen.

Sally’s talk is rich with insight on how the world sees–or chooses not see–those referred to as disabled, and how they are treated. I had never heard her phrase “competitive misery” but it is so fitting. Sally explains how to qualify for the most public supports, you are incentivized to be the most miserable. While you may win the game of competitive misery, as Sally says, you lose in the game of life.

She is speaking of the measures public systems put in place to require a person to be near destitute in order to qualify for needed support services. There are no doubt public policy, economic, and justice arguments for why these requirements are justified: it avoids otherwise able-bodied citizens from simply taking advantage of supports, which are truly needed by others; it serves as a way to “means-test” those who access public supports, placing the responsibility on those with means to provide for those supports for their loved ones.

It is this very system that requires, then, individuals who need support services to become “perpetual beggars,” in Sally’s perfect way of putting it. This, and how society commonly refers to the disabled as “burdens,” are the cited reasons I wrote about here for why mothers choose to terminate following a prenatal diagnosis: their concern about the burden their child’s disability may pose and their concern about society’s willingness to support and care for their child.

Well, for Sally, she was not going to stand for her son Jackson to be a perpetual beggar. She did not want to win the competitive misery game. But, she didn’t know how to avoid it.

Sally’s humility is what makes her presentation all the more compelling. I doubt many of us know how we are going to make our own lives a success, much less a child with a disability’s life a success. But, listen to Sally’s experience: she made it happen because she asked others to help her build this life for her child. And, listen to their answer: they said “yes.”

At least in Sally’s experience, when she was concerned and worried about whether society would support her child, she did not stop there; she asked others to help and they did. She asked and received. Society did help her and her child.

Sally’s experience may not be one of universal application, but it certainly provides hope. Too often, we can be paralyzed by worry and doubt, when if we simply asked for help, we might be surprised at how many are willing to do just that.

This week, in Washington D.C., the National Down Syndrome Society (NDSS) is hosting its annual Buddy Walk on Washington. It is the day when Down syndrome advocates from across the country descend on Capitol Hill to ask if our society will help our loved ones with Down syndrome. This year’s “ask” is the precise fix to the competitive misery game and will enable individuals with disabilities to avoid being perpetual beggars.

This year, advocates will be asking their elected officials to support the Achieving a Better Life Experience Act or the ABLE Act. The Act essentially creates the equivalent of a college savings account for an individual with Down syndrome, except that besides college (which it could also pay for), it creates an account out of which the individual with Down syndrome may pay for certain qualified needs and expenses.  The Act is needed because, right now, to qualify for public supports individuals with disabilities can have no more than $2,000 in assets.

The link above for the ABLE Act will take you to the NDSS’ website with more information and ways you can help with the Act’s passage. The Able Act would allow those who share Sally Richards’ humble goal to achieve it: creating an ordinary life for extraordinary people.

I think Sally’s talk borders on the sublime, particularly the very end. What did you think after you watched it? 

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  1. […] Playhouse is as much for parents as it is for children. For parents who have just been given a prenatal diagnosis of Down syndrome, GiGi’s Playhouse encourages and supports families at the facility to provide education, […]

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