84 Minutes… and Counting

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I recently got a letter from the Social Security Administration asking me to participate in the National Beneficiary Survey (NBS) for those on Social Security Disability. The supposed goal of the survey is to improve programs that Social Security offers and to see how existing services are being utilized. I was “randomly selected” to participate in the anonymous survey. I think this is meant to make me feel special. As if I’ve won some kind of prize— like a free donut.

According to the letter, the policy research company tasked with facilitating the NBS offers a $30 gift card to participants who complete the phone survey. This line caught my attention because I like gift cards. And the fact they were going to give me a gift card for giving my opinion was very enticing. I am a person with many opinions. Further, giving suggestions and feedback is one of my favorite things to do— even when my opinion isn’t wanted, needed, or welcome. So, the fact that they wanted me to give my opinion made this a Win/Win situation for me.

So, I gave them a call. After waiting on hold for a few minutes, I was informed that the survey would take around 50 minutes. That’s a lot of time. And it’s especially a lot of time when you’re a disabled person like me that takes nearly 2 hours to get up, showered, and dressed each morning. But, I did have opinions to share. Lots of them.

I told Lucy, the survey company employee, to proceed. She began by asking me about my disabling condition, which then resulted in me having to spell out Spinal Muscular Atrophy because no one knows what the hell it is. Then, she asked:

“When did you first get a disability that inhibited your ability to work?”

“During the Reagan Administration.”

“Pardon?”

“I mean, I suppose it wasn’t Ronald Reagan’s fault, directly, but I born and diagnosed with SMA while he was president.”

As the questions proceeded, it was very clear that the survey wasn’t written with people like me in mind. This is odd because I’m über-disabled. If you had to give an alien from outer space a stereotypical example of a disabled person, I’d be your girl. But, this doesn’t mean that Social Security sees it that way.

“When do you believe that your disability will improve enough for you to get off of SSDI?”

“Not even the Vatican can make something like that happen.”

“How about in 2 years?”

I launched into a detailed genetic description of SMA, not fully satisfied until I could hear her nails clicking speedily on the computer keyboard in the background. I was determined to make my survey answers the most thorough and detailed she had ever encountered– like damn Tolstoy’s epic War and Peace. I wanted every word I said entered in the record. I was going to earn that $30 gift card.

“What could we do to help you return to work full-time? Job training?”

“I don’t need job training. I have a university degree. I graduated with honors. The main problem here is that Medicare & Social Security Disability Insurance need to cover home-based personal care attendants. The barrier of inadequate home-based care is what prevents many of us with the skills and abilities to work from doing so. How can we work if we don’t have someone to help us get dressed? How can we work if we don’t have someone reliable to drive us there? The faulty poverty-driven Medicaid system inhibits us from bettering ourselves by punishing us for even small advances we make by stripping away the meager benefits we receive. This needs to change. You want more disabled people to work? Make home-care coverage part of the Medicare program. I guarantee you’ll see results from that investment.”

“So, would a job coach help you return to work?”

I began to feel a headache nag at the corner of my temple. I began to seriously regret doing this survey. Just like a woman always regrets getting bangs. While at the salon you think it’s great, you’ll inevitably realize that those bangs will never resemble the rest of the hair on your head. This survey was turning out just like that.

Then, Lucy began asking me about my physical abilities and other aspects of my life. And that’s when the survey became more interesting.

“Can you climb a flight of stairs?”

“I assume you mean without Inspector Gadget’s help.”

 

“Can you stand and bear weight?”

“Nope.”

“When was the last time you could stand and bear weight?”

“Please don’t make me bring up Ronald Reagan again.”

 

“Have you served in the Military?”

“HAHAHA! Wait— is that a serious question??”

 

“Have you participated in the Ticket to Work Program?”

“No. But, I want to talk about the military thing some more.”

“Umm— okay.”

“Can you imagine if I went into a military recruiter’s office and tried to enlist? They would freak the hell out.”

*The sound of Lucy’s typing ceases and she begins chuckling.*

“I should do it. I’m really good at driving my power wheelchair— which is operated by joystick. Therefore, I could pilot a military drone airplane without a problem. So, that means that I could kill innocent civilians just as easily as an able-bodied person… maybe better.”

I glanced at the clock. I had been on the phone for 84 minutes—and counting. The questions went on for a few moments longer, but my attention started to fade until the very last question:

“Is there anything else you’d like to add?”

“Yes, actually. And I want you to write this down. Are you writing this down?”

“Yes.”

“There’s a bill in Congress right now that could address some of the issues I’ve raised in this interview. It’s called the Disability Integration Act. H.R. 555. Those of us with disabilities want to live productive and independent lives. Please help us make that happen.”

She thanked me for participating in the interview, and wished me all the best. Then, she asked me if I wanted the $30 gift card mailed to me, or someone else. Someone else?? I actually had to have her repeat the question because it was so insane.

Does anyone spend 84 minutes on a survey and then give the only good part about the entire experience away to someone else? No. Definitely not. I may be disabled, but I’m not a communist.

Ronald Reagan would be so pleased.

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Inclusion & Integration — Everyone Wins

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(This piece originally appeared today in The Patterson Irrigator.)

Recently, this newspaper chronicled the story of Owen Tyler— a seventh grade student with Down syndrome that is an active and valued member of the Creekside Middle School wrestling team. A video from one of his matches went viral online, highlighting the story of his inclusion in school and community activities. When I saw the video myself, it made me smile. After all, where there is inclusion, all humanity thrives and flourishes.

I would like it if we lived in a world where stories like Owen’s became commonplace. That inclusion became the rule, not the exception. That videos like the one from his wrestling match became so ordinary that there would be no need for it to be on television news.

As a disabled adult, I can attest to the importance of inclusion. I spent my youth mainstreamed in school classes and welcomed in extracurricular activities. This allowed me to grow and shaped the adult I would become. Further, I learned that each diverse voice counts, and that includes disabled voices like mine. Like Owen’s.

We must remember that inclusion of disability doesn’t end in childhood— it must continue on into our later years, too. After all, we spend much more of our lives as adults than we do as children. So, as a society, we must commit to this principle. We must value these life experiences and the importance they bring to society at-large.

The disability community is the only community of which anyone (regardless of age, race, gender, and income) can suddenly find themselves a member. An illness, an accident, the effects of age, can all lead someone to become disabled. At any time. This is why valuing inclusion is so important. Because there’s a good chance that it could affect you, or someone you love dearly, at some moment in life.

There is a bipartisan bill sitting in Congress right now called The Disability Integration Act (S.117, H.R. 555). It seeks to secure the Constitutional right to liberty for disabled people and seniors who want inclusive lives in the community. It wants to help aging seniors and the disabled stay in their homes. It seeks to save millions of federal and state dollars by avoiding expensive institutionalization, which is far costlier and less-effective than home- and community-based services. But, most of all, it seeks to make the spirit of inclusion part of the law.

This bill needs public support to help it move forward. So, I urge you to learn more about The Disability Integration Act. Talk to your elected representatives. It could make a big difference to you and the future of your loved ones— whether you realize it now, or not.

After all, where there is inclusion, all humanity thrives and flourishes. Just ask Owen.

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