Benjamin Franklin once said nothing is certain in this world except death and taxes. While I agree with him–and really, who doesn’t–I think he may have left out something. Time is certain, too. Because of the way the world works, because of its fallen nature, we have limited amounts of time to do things. There are only 24 hours in one day, 7 days in one week, 365 days in one year. If we’re smart we learn how to use those hours and days judiciously. Even those of us who are good at time management often feel like we’ve run out.
I wonder if people with disabilities are vulnerable to feeling like time is running out more than most? Actually, I don’t have to wonder. I’ve felt that way often. For instance, by the time my mom was 30 she had already known my dad for years. They’d been married since 1982, and she was 30 by the time I was born. Meanwhile, I’m still single. Although I believe God is allowing my time of singleness, and even though I intend to use it well for His purposes, I am feeling some pressure. After all, I don’t want to be 70 when my kid graduates high school, you know? And that insidious little voice inside whispers that cerebral palsy is the main reason I’m still waiting.
By the time most people are my age, they’ve lived outside their parents’ homes for at least a decade and usually longer. Millennials have changed this somewhat, as has our sluggish economy. Yet the pressure, the inner ticking clock if you will, still exists. “Get moving before you become a disability statistic! Do something–your parents won’t be around forever!”
In fact, ever since my maternal grandmother died I’ve been increasingly faced with two facts. One, I have one grandparent left. Two, once she goes on to eternity, there is no one “in front of” my parents anymore. Grown woman or not, that’s just plain scary especially in my situation. And so I don’t think it’s far-fetched of me to say that other PWDs might be feeling their clocks tick, too.
Maybe you’re the loved one of a person with a disability and have felt or said similar things. For instance, maybe your child was born with severe physical disabilities or a severe intellectual one. Maybe he’s six or seven right now and you’re saying, “Is it too late to take him out of a special ed school and mainstream him? Maybe it’s too late for him to learn to read and do math like his peers can. It’s way too late for early intervention services, isn’t it?”
Maybe you’ve got a teen with autism at home, as do a couple of the ladies I met at my recent conference. Maybe you’re saying, “She’s ten; it’s too late to teach her independent living skills. She’s 15 and we just got the autism diagnosis because our physician believed girls don’t get ‘real’ autism. It’s too late to find the people who will best help her.” (Actually, let me answer that really quickly–*you* are the best person to provide what your teen needs).
Maybe you’re like me. You have a disability and have fought all your life for a shred of what the TAB world calls normalcy. Aside from the fact that “normal” is a dryer setting and not much else, it feels lonely and awful. Like me, you might say things like:
“I’ve tried Vocational Rehab and job services. They won’t help me the way I need. I’ve been bullied at work or turned down for many jobs. It’s too late for me to have a meaningful career.”
“I wanted to be left alone to play as a little kid.” (By the way, this is a natural desire). “I didn’t cooperate as much as I should’ve at therapy and now it’s too late to learn to cook, do laundry, whatever.” (Baloney. Remember, very few human beings ever do a perfect load of laundry or cook pheasant under glass. And you don’t need a therapeutic setting to learn that stuff).
“My parents sent me to this group home when I turned 18. It’s a nice place and all, but I want something else. The problem is I’m 25 or 30 and it’s just too late.”
That ticking clock gets to us all, yours truly included. I’m still learning, in fact, that time is more relative than I always thought, was always taught, it was. The truth is, our time is finite. We will all run out someday. But if you’re sitting here reading this blog, then your day is not today. You have time!
I think that without meaning to–and sometimes being fully aware of what they’re doing–temporarily able bodied people push their own timeline onto PWDs. It’s what happens when teachers or therapists say things like, “Our goal is for Colleen to complete X goal by spring semester.” And then when Colleen doesn’t do so, they write the goal off–effectively writing off Colleen as a failure, too. It’s what happens when aging parents shake their heads and say, “But John’s already 40,” meaning that, perhaps, if he hasn’t achieved independence now he never will. (And by the way–preaching to the choir here–there is nothing wrong with living with family members if that is what the situation calls for. But do not assume it is a permanent state).
By continuing to focus so much on our own clocks, we cheat ourselves. When temporarily able-bodied people insist that persons with disabilities live by their clocks, they deny them the chance of a life lived at their own pace (which is what people without disabilities get just by virtue of existence). They also place people with disabilities in a box, reinforcing feelings of shame, hopelessness, and failure.
Not every TAB person means to do this; in fact, I’d say most don’t. They love the person with a disability in their lives. They are simply responding to the pressure they feel, and their own fears. You know, fears that say things like, “I won’t be here forever. What will Brock do without me?” “Yeah, Julie’s doing great at school now, but how much will her dyslexia/dyscalculia/Down Syndrome/CP affect her in college? Should I even let her attend college?”
I’m going to challenge you and myself today, readers. The challenge is, stop listening to the clock. Start telling yourself and the person with a disability in your life, “It is never too late. You can do whatever is needed or wanted to change your life and I am here for you.”
I’m going to leave you with the links for two separate articles from disability advocate Kathie Snow. One is called “A Tale of Two Students,” and tells the story of two high school boys, Dylan and Brad. Both have Down Syndrome, but Dylan’s parents treated it as natural. Brad’s parents did not. For Dylan, the future looks fulfilling. For Brad, it does not–but what would happen if his parents turned it around? If they said, and taught Brad to say, “It’s not too late?”
The other is called “Annie in Disabilityland.” In this story, Annie’s parents found out she had a disability. They listened to what all the “experts” said to do because they didn’t think they were the best people to help Annie. By the time Annie is ready to graduate high school, she is headed to a group home she doesn’t want to be in, is not independent, and is working a job she never asked for. But then she speaks up, and her parents listen. They fear it’s too late to turn things around–but it isn’t! Their decision now means they have all the time in the world.
Both stories are fiction, but the lesson is real. Turn off your clock, and turn off theirs. Let’s make the most of the time we have.