i don’t write much about policy but…

It’s disappointing that I found a program geared toward disabled and minority students that would pay for my schooling, give me a summer job in DC for the next two years, and ensure employment after I graduate…yet, my number one concern has to be the effect it would have on my benefits.

I’m tired of people thinking beneficiaries are lazy. These aren’t “benefits”: things like personal assistant basic necessites disabled people often need. Private insurance doesn’t cover them and without that, what keeps me out of a nursing home?? What gets me out of bed in the morning (literally) so I can work or go to school? The love of my family? Pshh. I’ve been lucky, most disabled folk don’t have families and the lifestyle I’ve had.

There are work “incentives” out there for Disabled people my age, like Student Earned Income Exclusion, Plans for Achieving Self Support, extended Trial Work Periods— the list goes on. But, if someone who as a congressional intern working on disability policy had to research these incentives like her life depended on it (actually it did, and does) and is still scared to death about employment/losing benefits, what about the rest of our community? This is a big reason why I want to go to law school; I know to be economic self-sufficient, I HAVE to make A LOT of money because I’m going to lose my benefits and I don’t want to live at the economic level that is required to do a Medicaid buy-in. What about other people who don’t have this kind of access to higher education? Keep in mind that I am a person who has had a lot of support in regards to academic opportunities, extra-curricular [outside of school] programs, and parents, who because of Korean culture, are willing/able to invest their whole life in my future.

Personal assistant services are just one aspect. Disabled people still face blatant discrimination in the interview process, transportation just to get TO work is difficult in rural most areas, and people can be denied an accommodation if they aren’t disabled enough because they take medication or use assistive tech.  Plus, there is that little ol thing that disabled people often don’t have the access to opportunities they need to be qualified for the job in the first place. So many people have told me they have been encouraged to drop out of school so their school could have high test scores.

I’ll take down the supercrip facade [face] for a minute. Sometimes things feel impossible. There are so many barriers in place, sometimes I just don’t know where to begin.


Filed under disability

2 responses to “i don’t write much about policy but…

  1. This is a big reason why I want to go to law school; I know to be economic self-sufficient, I HAVE to make A LOT of money because I’m going to lose my benefits and I don’t want to live at the economic level that is required to do a Medicaid buy-in.

    Oh my goodness! To hear someone else say this feels like someone reading my thoughts and fears. I have the exact same dilemma. It would cost so much to pay for my cancer care that I can’t risk doing anything that would jeopardize my Medicare coverage. Oh, and like you said, Lazy my ass!! I got up and went back to working 40+ hours a week in a pharmacology lab only five days after having a major surgery on my chest cavity. So I’m ready to cuss out anyone who starts up that talk about lazy beneficiaries around me. You and I know that’s ridiculous. Most of the people with disabilities that I know WISH they could do more without the system punishing them for wanting to be included in society.

    I definitely feel your pain. I have grad school offers from two prestigious universities waiting for me when I graduate but I don’t even know if I’ll be able to accept them when the time comes.

    The system is constantly disabling us.

  2. RIGHT ON!
    Gosh, I am just now starting to get SSI because my parents made “too much money” before, so I couldn’t qualify. Now that I’m 22 their income doesn’t count against me. But now I am worried about having to find an excellent job to pay off all my school debts and has good health insurance. I’m definitely scared about it. I am worried about discrimination too.

    Sorry your comment got deleted! That sucks!

    I’m going to have to check out this CIA job, I think I’d love to work for the CIA just so I could say that to people “yeah, I work for the CIA” haha! I don’t know about moving to DC though..

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