Our Children Aren't Broken - Thoughts On How Society Treats Disability

Our children with disabilities are not broken; Removing the Stumbling Block

Do you know Jonathan Mooney? You need to. He’s awesome. I have heard him speak and I’ve read his book, “The Short Bus: A Journey Beyond Normal”. I was immediately drawn in by his deliberate use of the proverbial short bus. Instantly recognizable and virtually impossible to overcome as a stereotype, the “short bus” brings with it society’s negative constructs around special education and the derogatory slurs frequently assigned to children who have disabilities. Whether you are as immersed in the world of inclusion as I am or not, this is a book of outstanding depth and profound insights.

I was most taken by chapter twelve, a chapter which focuses on Katie, a young woman with Down syndrome. As a part of his quest to understand “normal”, Mooney explores Katie’s desire to live an ordinary life, yet worries aloud that this may not be possible in America. In conversation with Katie’s mother, Mooney learns of her fear that Katie will always be poor as she “does not accept SSI or any other aid from the federal government…If Katie accepted SSI, she could earn no more than seventy dollars a month from a job; if she made more than that amount, she would lose SSI money. To remain eligible for Medicare in Ohio, Katie could accumulate no more than a thousand dollars’ worth of assets. So Katie can’t even own a cheap, used car. [Her family] had been told not to include Katie in their will, because this “wealth” would threaten her future ability to get SSI and Medicaid.” I believe that this resonated so deeply for me due to the time I spent in Washington DC lobbying on behalf of the ABLE Act as a part of Jewish Disability Advocacy Day. There are similar stories to Katie’s all over our country.

Further, as an advocate for inclusive education, I found it frustrating that “Katie’s space in the community college, one of her best outlets for socialization, was also evaporating. Because of a complicated legal loophole, she is not eligible to receive special accommodations in her classes without identifying herself as a student with a disability. But if she self-identifies as a student with Down Syndrome, she will be considered ineligible for financial aid and accommodations because, based on an assumption of her “low IQ” she would be considered to have no “abilities to benefit” from higher education.”

And so, given all of this, Mooney earnestly asks Katie’s mother, “How do we help Katie?” By way of reply, she simply laughs. “I understand where that question comes from – I used to ask myself the same question. How can I help or fix Katie? But Katie isn’t the one who needs to be fixed.”

And there it is. There is the profound truth. When we spend our lives trying to “fix” our children and our students; no matter how pure our intentions, we perpetuate a societal concept of “normal” that views disability as broken. It is deep in our cultural consciousness to view Katie and other people with disabilities through the lens of what is wrong with them. We teach, we train, and we try our best to fix. But our children aren’t broken. 

Every child is perfect, created in God's image. Every child is a gift and has gifts to share. That’s it. It’s a simple truth. Our children aren’t broken. 

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Fireworks as a Model of Successful Inclusion

As we prepare for July 4th celebrations around the country, many communities are organizing fireworks displays. One of my family’s traditions is to point out our favorites as we watch together. My daughter likes the swirly ones and my son likes the ones that are loud and bright. My husband enjoys the ones that shoot up the highest while I am most drawn to the ones that crackle.

I suspect that we are not so unique. After all, a fireworks display is most enjoyable when dozens of different patterns explode together in a bright mix of color and sound. In fact, most of us would be quick to criticize a display that had a lack of variety, too much of one color, or anything else that made it seem dull or uninteresting.

Our day-to-day lives should be a mirror image of a successful fireworks display. Experiences should be their most enjoyable when we successfully bring together a vast array of people and perspectives, merging them into a colorful and intriguing whole.

And yet, we know that this is not always the case. We know that we have a way to go before we can say that we fully celebrate such diversity. We continue to find comfort in familiarity and security in the known. We need to move our culture to a place where we look around and wonder what’s missing; rather than sitting idly by while a select few even notice those who are kept at a distance.

Quite simply, inclusion is belonging. And when we recognize that every person - yes EVERY person - has a right to belong, then, and only then, will we experience the most outstanding finale of the most spectacular fireworks display we have yet to see.

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