Lost Girl

Hello readers, and happy August. One month closer to autumn, and another month here on the IndependenceChick blog. Let’s get started.

One of the joys in my life is my six-month-old niece, my brother and sister-in-law’s first child. She was over at my place the other day, and she’s a delight. Her arms and legs never seem to stop moving, and she’s probably the most headstrong and emotional baby ever born. She’s usually happy, but when she’s hungry, you better feed her NOW or suffer the consequences! She’s eager to see, hear, and experience everyone and everything, so getting her to nap can be a struggle. We call her a “wiggle worm” because it’s rare that my niece actually wants to be held and snuggled. Even in your arms, she’s ready to move and shake the world.

Sometimes this can be difficult. For instance, I rarely hold my niece right now because she’s not yet sitting up, and I don’t want to drop or hurt her. I simply can’t hold her weight without assistance. I’ve helped out with her, but never alone, simply because some of my fine-motor skills aren’t there. And that breaks my heart at times. It makes me wonder who do I think I am, dreaming of having a family? Who do I think I am, thinking I could safely raise a baby to adulthood? Sometimes it makes me resentful–why didn’t anyone ever teach me the finer points of raising a baby?

And then I remember, well, you can’t teach that. To a point you can–that’s why we have home ec and parenting classes. But in the reality of day-to-day life, you just don’t teach How to Raise a Kid. You learn it on the job. Except, most people with disabilities aren’t allowed to learn on the job. They’re expected to learn in highly prescribed, regimented, and monitored manners. They’re expected to check off goals written and handed down by other, temporarily able-bodied people, and to meet others’ standards of success before moving on, if that ever happens. PWDs live their lives largely according to Plans, whether those are IEPs, IFSPs, IHPs, Person-Centered Plans, or something else.

Within the Plans, a certain level of safety exists. If you’re a parent of a child or teen with a disability, an IEP reassures you and your student that he or she will receive the education and accommodations he or she needs. A Person-Centered Plan can give an adult with a disability the reassurance that his or her life is going in a certain direction. But here’s what gets me, folks. At some point, the Plans have to go away. That’s life. There’s not a paper, or a rule, or a goal, for everything you’ll ever encounter. There are certain things we can’t teach people, whether they have disabilities or not.

That fact makes me wonder…is there life after the IEP? Well, I take that back. Of course there is. The real question is, how can a PWD expect to live it without guidance–and how much guidance should we give? What kind of guidance should it be? When will we give PWDs the chance to learn on the job, like most people do every day of their lives?

Let me put this in practical terms. Like most students, I went to school for twelve years. Unlike the majority, I had an IEP. In college, the IEP went away, but that wasn’t a big deal most of the time. I was fortunate because I could advocate for myself, although that was a crapshoot at times. Sometimes people just don’t want to cooperate, or insist on believing the worst of you, because you need something different. But the point is, not having the IEP was kind of freeing.

But then college ended. Graduate school ended. I didn’t want my IEP back. Heaven knew I’d had enough of people saying, “You will do X and Y with 90% accuracy 2 out of 3 times.” And heaven knew I didn’t need anymore occupational and physical therapy to learn “life skills.” Let me be as blunt as I can. I can’t tie shoes, but that’s why slip-ons were invented. Just because I can’t cut food with a knife, some TAB person doesn’t get to tell me what, when, and how to eat. I don’t need “life skills classes” to teach me how to treat other people, how to answer the phone, how to keep myself from looking like I just rolled out of bed and hit the streets every day. But…well, sometimes I felt lost.

What do you do when your brother and sister-in-law bring over your baby niece, and you know deep in your heart, they’d never leave you alone with her? (You accept, but your heart breaks a little, even though you know it’ll be easier when she’s bigger).

What do you do when a client at work becomes borderline abusive, but you fear quitting because, well, what if you can’t get another job? (You stay, or you go back to unemployment and “job services.”)

What do you do when you land the job interview and wonder, “Do I disclose or not? How much of my CP, my autism, my whatever, do I reveal or let show?” (You ask advice, but then wonder if you should take it).

What do you do when that cute guy at church, the community center, your book club, asks you on a date, but you hesitate because well, a lot of PWDs in relationships face abuse? (Oh, boy…)

What do you do when the animal shelter turns down your adoption application? (You fight, but you might lose. So sometimes, because you’re afraid to lose–again–you walk away).

What do you do when lack of transportation keeps you from doing what you want and going where you want, for the 200th time? (You stay home and fight discouragement).

What do you do when you want your favorite meal, but no one’s home to help you cook it, and when they are home, they’re too tired or busy from their work, their extracurricular activities, their problems, to help? (You eat what they make).

What do you do when everybody is too busy with their problems to hear you? (You shut up).

What do you do when you have a dream, but because you know your limitations so well, you don’t step out in faith for fear of failure?

What do you do?

I’m still figuring it out, as I’m sure every PWD is to some degree. There is no IEP, no anything-P, for this. There’s no formula, no set of goals, no measuring stick. Are there solutions? Sure, sometimes. That’s why a ton of disability services exist–but they’re often geared toward only a certain subset of disabilities or groups of PWDs (often the most severe, but that’s a separate issue). But often, clear-cut answers don’t exist. It’s nobody’s fault; it’s just life.

But does that have to be life for PWDs? I know I’ve asked this question millions of times, but it never leaves my head, and I won’t stop asking until I, until we all, get answers.

I realize we can’t teach “life.” There’s absolutely no way to know, 100%, how to do some things until you just do them. (Hat tip to Nike). But the question on my mind is, even if we can’t teach, can we do a better job of preparing and encouraging? For instance–yes, we can teach self-advocacy. But I think in doing so, we should say, “Sometimes self-advocacy will only take you partway. Here are some options for when you get pushback.” Yes, we can teach diaper-changing, bottle-warming, the safe way to hold a baby, etc. But in doing so, we should also say, “You have the potential to reproduce and raise a family–if you want to, with the right people. Here are some ways to know who’s right and who’s not. Here are some modifications you might use.” (For example, I sometimes hold my niece with a pillow under the arm that isn’t supporting her. That keeps her from falling off my lap).

You remember the Lost Boys from Peter Pan? Yeah–well, as an adult with a disability, I often feel like a Lost Girl. I can function, but that doesn’t mean I know how to navigate every situation. After living like this for years, I know there must be more Lost Girls and Boys out there–except they grew up. They’re Lost Men and Lost Women.

Hear us, temporarily able-bodied world. The IEPs, the other Ps, the safety of Disability Land–for many of us, it’s gone. Find us. Listen, and help us navigate. And if you are one of those men and women: don’t give up. You deserve to be found. You deserve to know what to do. I for one won’t stop looking until I find answers for myself, and for you.



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