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Not Disabled Enough

A young woman with shoulder length blonde hair smiles as she holds an infant girl asleep on her chest.

Change a tire. Communicate in ASL. Fix a broken garbage disposal. Start a campfire. Remember names. Wear shoes with more than a 1” heel. Have a meaningful conversation about sports. Keep my cuticles in satisfactory condition. Know what I’m doing next week. Remember what I did last week. These are some of the many things I can’t do well.

I need other people to keep my life running. My husband is the remember-er — he knows where I left things, who I talked to, and where I need to be. He is the fixer of household things and the patient de-tangler of knots. My daughter remembers the shopping list at the store. My son can cook a steak to perfection. I have a friend who can pick the right paint color for walls. Another friend knows where to find bargains. Another knows what nutritional supplement to take for each of my health concerns.

My daughter Aubrie needs her people too. She has a list of things she can’t do. It includes a lot of things that we don’t expect on the “can’t do” list of a 20-year-old woman. We have spent a lot of time recently compiling her “can’t do” list. We watch carefully for every struggle. “Oh — you need help to carry the laundry basket down the stairs? Remember that one! Need help cutting your meat? Clipping your toenails? Remember that!”

As the impact of Kabuki syndrome has continued to show itself throughout Aubrie’s life, we have celebrated every milestone and focused on possibilities. She knows she has Kabuki and all that that entails, but she also knows she’s a fabulous person with abundant gifts. And she’s grown up delighted to be Aubrie. So why suddenly focus on the “can’t”s?

Well.. she hit adulthood. As an adult, she can apply for Supplemental Security Income for people with disabilities who are unable to engage in substantial gainful activity. We hope one day she’ll find a satisfying job using her talents and skills and earning a livable wage. But for now, that’s clearly not possible. Her skills don’t fit most entry level jobs. She’s not going to flip burgers, work a cash register, answer phones, or clean anything well.

The SSI application requires all the details of her medical history and a complete “can’t list”. Her first application was denied. Apparently, she’s not disabled enough. Many people with obvious disabilities are denied SSI when they first apply. Seasoned families tell us that this is not uncommon and that we may need to hire a lawyer to help.

So this weekend, she completed the Function Report for the SSI appeal. When the application asks “Can you __________? Yes or No?”, an affirmative answer means you can do __________ successfully under every circumstance with no assistance. She’s worked hard to be able to do things. But most of the things she can do are not that kind of "Yes". Usually, she can do __________ most of the time, some of the time, under the right conditions, with no unexpected complications, with reminders, with help readily available, or in a familiar setting… and that’s actually a “No”.

It’s pretty defeating. She said, “I wish I could just live my life with my disability instead of having to spend my life proving my disability!” As if it’s not hard enough needing help much of the time, she shares her “can’t do” list and it’s not long enough.

Dear younger me, holding your medically complex infant, wondering if she’ll be able to see, hear, eat, walk, or talk, someday you and this grown up sparkle of joy will be frustrated that she’s “not disabled enough”.

I don’t know what this means for Aubrie’s future. But I know what it means for her today — frustration, depression, and exhaustion.

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