I recently got into a conversation with an acquaintance about the cost of caring for kids with special needs. This is a smart, savvy woman who has a son with mild Aspergers, and who knows that I have a child with more significant special needs. I mentioned a study that found treating people with autism in the United States cost $126 billion last year.
This woman proceeded to tell me that something has to be done in this country because there is only so much money to go around. Her take: If there are 10 kids with mild autism and one with profound autism, the money should go toward helping the 10 kids because they would be "better candidates for contributing to society."
I was shocked, but kept my voice steady. "That kid on the severe end of the spectrum deserves help as much as the kids on the mild end do—and we should find some way to help them all," I told her. I don't think that's idealistic; I think that's the decent thing to do.
A woman listening to us talk—another smart person I respect—chimed in, kindly, “I don’t think you can be rational about this.”
She was right: As a mom to a child with cerebral palsy who's affected both physically and cognitively by the condition, I couldn't be objective. The question is, why isn't it a given in society that all kids deserve the chance to reach their potential? I wasn't angered by the conversation; I was dejected, because I knew the woman was voicing thoughts that many, many people have.
Since having a kid with special needs, I've become acutely aware of how some people view them. Often, strangers stare at my son through pity goggles, unable to see past his disabilities. On occasion, I've seen raw nastiness come out online. What really takes me aback, though, is intolerance coming from good, sophisticated people, this thinking that people with special needs are somehow lesser human beings, people who don't deserve the extra resources it can take to help them achieve. Burdens, even, as a recent Newsweek article on the special-needs care-crisis mentioned: "Many of the medical advances that have improved the lives of special-needs individuals have also increased the burden of caring for them."
Burden? My child? Expensive, yes. Demanding, yes. Emotionally draining at times, yes. "Deadweight/encumbrance/misfortune" (all synonyms for "burden"): NO.
Max is nine. Like any kid, he has his unique charms and talents. He lights up rooms with his smile, and inspires friends and family with his determination to overcome the challenges of CP. More than once people have told tell me that he's influenced them to power through when they've faced obstacles. Sometimes, I hear from students studying to be speech therapists who say Max has made them more revved than ever to go into the field. His spirit has transformed my soul.
The words "cerebral palsy" or "autism" or "Down syndrome" tell you nothing about a person's abilities or potential. To view kids or adults with special needs as people inadequately capable of contributing to society is flat-out prejudiced.
No matter what the future may hold, my son is a person of worth—significant worth, in fact.
My son with special needs is as worthy as President Obama.
He is as worthy as...
Bill Gates
Warren Buffet
Donald Trump (and he has better hair!)
Derek Jeter
Bruce Springsteen
Steven Spielberg
Mark Zuckerberg
And even, gasp, Justin Bieber.
Should you argue that these are men who contribute more to the world than my son ever will, well then I say that's an incredibly narrow-minded way of looking at life. Who knows what Max is capable of? Who are any of us to judge his worth?
No person's merit (let alone a child's) should be determined by the way his muscles move, how his brain works or whether he speaks in the way that people typically speak or looks the way people typically look.
My son has made a difference in this world and will continue to do so, in his own way.
My son is full of promise.
This, I hope you can understand.
Max is nine. Like any kid, he has his unique charms and talents. He lights up rooms with his smile, and inspires friends and family with his determination to overcome the challenges of CP. More than once people have told tell me that he's influenced them to power through when they've faced obstacles. Sometimes, I hear from students studying to be speech therapists who say Max has made them more revved than ever to go into the field. His spirit has transformed my soul.
The words "cerebral palsy" or "autism" or "Down syndrome" tell you nothing about a person's abilities or potential. To view kids or adults with special needs as people inadequately capable of contributing to society is flat-out prejudiced.
No matter what the future may hold, my son is a person of worth—significant worth, in fact.
My son with special needs is as worthy as President Obama.
He is as worthy as...
Bill Gates
Warren Buffet
Donald Trump (and he has better hair!)
Derek Jeter
Bruce Springsteen
Steven Spielberg
Mark Zuckerberg
And even, gasp, Justin Bieber.
Should you argue that these are men who contribute more to the world than my son ever will, well then I say that's an incredibly narrow-minded way of looking at life. Who knows what Max is capable of? Who are any of us to judge his worth?
No person's merit (let alone a child's) should be determined by the way his muscles move, how his brain works or whether he speaks in the way that people typically speak or looks the way people typically look.
My son has made a difference in this world and will continue to do so, in his own way.
My son is full of promise.
This, I hope you can understand.
