An Assembly, A Disability, and One Boy’s Question

by james s. hirsch

Each year my son's grade school brings in visitors to discuss physical disabilities. Sometimes a parent or medical expert visits while other times an individual with an actual disability will talk to the students. The idea, of course, is to humanize those with disabilities and make sure the children understand that the disabled should be treated with respect and dignity just like everyone else.

This year a blind man spoke to the first grade students and a deaf woman addressed the second graders. Garrett is in third grade, and he and his classmates listened to a muscular young man in a wheel chair. Born with spina bifida, he said he didn’t have a disability – he just had “different abilities.” He acknowledged that being in a wheel chair wasn’t easy, particularly when he had to transfer himself to go to bed or to the bathroom. But his physical condition did not prevent him from doing what he really loved: lifting weights.

After the program, Garrett went to the nurse’s office, which he does three times a day to get his blood sugar tested. Garrett, who was diagnosed with type 1 diabetes six years ago, has developed a close relationship with the nurse, and something was on his mind.

“Mrs. Graham,” he said, “do I have a disability?”

A good question, that.

What do we call diabetes? Is it a disease? No. That sounds too depressing. A condition? Too vague. A chronic condition? Better, but so too is recurring athlete’s feet. A malady? Sounds like a pet duck. A handicap? Not unless they’re going to give us a parking sticker. A lifestyle? Ugh. Some call it that, but “diabetic lifestyle” sounds like you’re testing your blood sugar in a beach bungalow with a surfboard under your arm. “Hey, man! I’m 183! Let’s catch a wave and live the diabetic lifestyle!”

Having had type 1 diabetes myself for 33 years, I frankly don’t know what to call it. But I do know that I would never say that I have a “disability.” Never. That word sounds as if I’m, well, disabled, but I’ve never felt that diabetes has “disabled” me from anything.

I never really cared about the vocabulary of diabetes until Garrett was diagnosed. You can’t really tell a three year-old that you have to take insulin shots to stay alive, so my wife and I told him that this is what he had to do so he wouldn’t get a “bellyache” or so he “would feel better.” But it didn’t take him that long – maybe two years – to realize that the insulin was the miracle fluid that kept him alive. When one of his buddies invited him to a night baseball game for a birthday party, Garrett pointed to me and then to himself – indicating I had to go with him so I could give him his injection. Even at age five, he feared he wouldn’t see the next day without his medication.

Garrett has always known what the stakes were in diabetes, but like many parents with diabetic children, we’ve wanted him to do everything that the other kids did. He was skiing at three. He loves sports and plays soccer, basketball, and baseball. He swims. He eats the same pizza and cake at birthday parties that other kids do – he uses an insulin pump, so that gives us a bit more flexibility – and he’s lobbying to attend a non-diabetic sleep-away camp like his older sister attends. Garrett goes to Camp Joslin, and we’ll consider a non-diabetic option in the summer of 2011.

Sometimes the messages are mixed. We’ve attended – and we highly recommend – the Children with Diabetes Conferences in Orlando. The kids get to meet people with diabetes who’ve climbed Mount Everest or competed in triathlons, but then when the kids go to Disney World, they get special handicap passes that allow them to go to the front of the line. We can climb Mount Everest, but we can’t wait in line for the Pirates of the Caribbean.

Garrett knows his limits. We try to discourage sleepovers, and when he does have one at a friend’s house, I’ll usually stop by once or twice in the evening to test and/or bolus him. I’ll stay at laser-tag birthday parties when all the other parents drop off. We try never to leave him alone in the house, even for short periods. We want him to be like all his other friends, but he knows he’s different.

Still and all, I think we’ve made Garrett feel that his diabetes is not going to limit him in his life. There are days he gets frustrated, but if someone asks him why he’s poking his finger, he’s not embarrassed to say he has diabetes. He makes no attempt to hide it. He doesn’t feel shame. By now, it’s part of what he is. As far as we know, he hasn’t been teased about it.

Until he saw the young man with spina bifida – and heard the teachers talk about disabilities – I’m sure Garrett never thought of himself in quite that light. He must have been confused, so he wanted guidance from Mrs. Graham.

With shoulder-length brown-reddish hair, a slight Irish lilt in her voice, and photos of her grandchildren on the wall, Mrs. Graham exudes warmth and energy. In some ways, she’s old school – she doesn’t use email – but she did quickly learn the insulin pump technology. She has also been one of Garrett’s guardian angels – a sweet, calm, and a patient presence every school day since he began kindergarten.

As she later told me, Garrett’s question – “Do I have a disability?” – caught her off guard. She stumbled trying to find an answer that was both accurate and comforting. She told Garrett that, in a matter of speaking, he did have a disability, because diabetes is something that you have to take care of every day. If you forgot about, think what would happen. In that sense, it’s not different from someone who is in a wheelchair or who is blind or who is deaf – it’s something that has to be managed every day.

Mrs. Graham explained that there is a law – the Americans with Disabilities Act – that’s an important law, because it prevents employers or schools or anyone from discriminating against people simply because they have disability. That includes diabetes, so it means that people with diabetes will be protected by the law and will be treated fairly.

But Mrs. Graham also told him that just because you have diabetes shouldn’t prevent you from doing want you want in school or in your life.

James’s son Garrett.

Garrett didn’t say much. Mrs. Graham tested his blood sugar, and he returned to his class. At the end of the day, she called me about the conversation. She was worried about it. I told her I’m really not sure what I would have told him, but I thought she gave him the right framework and she handled it beautifully. She sounded relieved that I was supportive and was glad that I knew what had happened in case he mentioned it.

That night, Garrett said nothing about the assembly, about disabilities, or about anything else from his day. Then I casually mentioned I heard he got to hear someone speak who was in a wheel chair.