The contribution of the severely disabled

Recently, I was listening to NPR and they were reading comments people had sent in on previously aired stories. I missed the original story, but I gather that the story was about a family concerned that Medicaid cuts were making it difficult for them to care for their severely disabled adult daughter at home. Instead, she had to go to a nursing home. The host said they received a lot of mail along the following lines: "I think it's fair to ask what her severely disabled daughter contributes, and why we should have pay for it."

So enough people feel passionately about this that they bothered to write in to a radio station. As resident mom-of-a-severely-disabled-kid, I think it's worth a response.

First, set aside the contribution question for a moment (I'll get back to it below). The fact remains that caring for a disabled person is insanely expensive. In his first four months of life, my son racked up a solid seven figures worth of medical bills. If I were not insured, or had crappy insurance, my family would have been utterly devastated through no fault of our own. Even with my great insurance, I don't have coverage for medical equipment. If my kid needs a wheelchair, leg braces, etc. etc. I could be out tens of thousands - so we have supplemental Medicaid. Parents of kids with special needs did not do this to our kids; disability happened to them. So there are three choices: Medicaid, bankrupted caregivers, or exposing the disabled on mountaintops. Medicaid is far from painless, but nonetheless I think it is fairly clear which choice has the smallest harm-to-benefit ratio.

Second, I think it's a question worth answering what the disabled can contribute. My son cannot live a full life. He will never live entirely independently, he will not contribute to the economic life of his community in any meaningful way (which is what I gather the commenter must have meant by "contribute"), he will not have children and raise a family.

So here's what he's contributed so far (and he's only 15-months-old). He's made our family happy. He gives hugs and kisses and smiles and giggles. He babbles and throws toys and his face absolutely lights up when he sees a member of his family or his stuffed dog. I am delighted pretty much every time I see him.

I understand that when people think about what it would be like to have a special needs kid, they think it would be utterly devastating. And we were utterly devastated when we found out, and it's still not what we would choose. I know when I heard all the moms talking about how much they loved their special needs kids, I thought they were lying - either to the world or themselves. I thought they felt guilt-tripped into pretending they loved their kid. Maybe I didn't put it into so many words, but that's what I believed. But I am not pretending when I say my kid makes me so happy. Maybe I'm self-deluded - who knows? But either way, my kid makes several people feel happy every day - which is not true of everyone.

Also, he makes people more morally virtuous. He has given my life a greater sense of purpose. In caring for him and coming to terms with his condition, my husband and I have both become more sensitive, understanding, patient people. He has done the same (perhaps to a lesser degree) for other relatives, his nanny, and even friends. Even strangers! I joke around that when I go out in public with him, I frequently have to have The Talk - where a stranger is moved to near tears and tells me how beautiful the disabled are, or how we all deal with life's obstacles but become stronger - and I just want to buy a gallon of milk, thanks. But the thing is, just seeing my kid reminds people of the better angels of their nature. Just being nice to him reminds them of their most moral selves, and reinforces a sense of treating everyone as valuable.

When we look at people's contributions only in an economic sense, and thus discount the contributions of the disabled, we are traveling down a path when we see people as commodities. My kid forces people to stop and think. If he is valuable, there is something more valuable in him than merely in what he can perform. When people respond positively to his presence, they are reminded that people are not valuable only in terms of economic contributions. He forces us to see everyone as less of a commodity, and more of a person.

I honestly think his mere presence makes many people better people. And again, not everyone who had all intact faculties can say that.

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