Monday, August 26, 2013

Let's Stomp Out Curebie Syndrome

Yesterday, a cerebral palsy awareness page posted a picture of a green high-heeled shoe that said "let's stomp out cerebral palsy". When several people with CP, including myself, replied saying they don't want a cure and won't be "stomped out", we all got banned from the page. It turns out the page's administrator is a mother of two sons who have CP, but she doesn't have the disability herself. Every self-respecting mother out there wants the best for her kids...right?

That's true, often until the kids have disabilities; then they suddenly need to be cured to be themselves. Nobody, or very very few parents actually think to ask their disabled kids how *they* feel about being cured. If the disabled person wants the cure, that's fine, but don't generalize. My disability is part of who I am, and I am not the only one who lives that way. Honestly, I'm not even sure how a potential cure would work for me. My left side is smaller than my right side, that's difficult to fix. They would have to give me stem cells on steroids or something, and that thought scares me. No disrespect to the great Stan Lee, but this is about as conceivable as a radioactive spider biting me and allowing me to shoot webs from my wrists.

It is impossible to promote awareness of any disability or other illness when you silence people who have said disability or condition. I cannot sit back and watch a CP version of Autism Speaks take shape. If you're at all curious as to why I say that, please read this post.

I still don't know how I stopped short of accusing this page's administrator of advocating for genocide. There is no cure for CP, so that seems like the only other option to "stomp it out." There was a huge group of people in the 1930s and 1940s who advocated a "be normal or die" lifestyle. You've undoubtedly heard of them if you've taken any history class in your lifetime, they were called Nazis. I know that sounds evil and condescending, but if you were any of us, you might see it that way too, especially after being on the receiving end of the same condescending attitude and deliberate silencing.

I saw an "I'll do anything for my kids" attitude here. Most mothers would do that, but most mothers would also love their kids just as they are. When you try to change anything about who your child is, you are misguided. This woman has a completely different definition of "living with CP" than I do. She's not living with CP and I can't sit back and read that without screaming "YOUR KIDS ARE LIVING WITH CP, *YOU* ARE LIVING WITH *THEM*!" When I hear that "I'll do anything for my kids" bit come out of the mouth of a mother like this, the name that comes to mind immediately is George Hodgins. His mother would've done anything for him too, including deciding that his life should end and murdering him...and that's exactly what she did. It seems socially acceptable to say your kids need to be cured because you can't deal with their disabilities and therefore can't love them for who they truly are, and obviously,  this is a problem. If you don't have a disability yourself, please stop acting like an expert on what we face. You might get teased as "that crippled kid's mom", but imagine actually being the crippled kid. You haven't seen a tenth of what your kids may deal with on a daily basis, and if part of that involves being bullied in much the same way you are bullying people like me, you probably won't hear about it until it's too late.

Later in the day yesterday, I saw another image posted on the same page. This one was a green cerebral palsy awareness ribbon with text that said "proud parent of a child with cerebral palsy". Excuse me for pointing out the obvious, but if you want your kids' disabilities cured, you are not a proud parent. You are a parent who is apparently putting your own convenience above your children's lives, needs, and opinions about themselves. You can't have your brownie points and eat them too. If we as a society should stomp anything out, it is people who think we need to be cured because we make their lives inconvenient. Help me stomp out Curebie Syndrome.

Monday, August 19, 2013

Social Security...Not exactly social, nor secure

According to the Social Security Administration's website, if you are receiving SSI in 2013, as an individual, you'll receive $8529.32 in total payments for the year. That's just over $710 per month. If that is your only source of income, you are literally living by government-funded poverty. The Department of Health and Human Services and the U.S. Census Bureau have defined poverty based upon where you live. The poverty guideline lies between $11390 and $14350 for an individual, and then you add approximately $4000-5000 for each additional household member.

The government will contend that SSI stands for "SUPPLEMENTAL Security Income", which would indicate that there is other income to be had, except that you have to prove that you are unemployable just to qualify for SSI. If your state has Welfare Cash Assistance, it's likely that you have to apply for SSI as a condition of receiving it, and SSI will replace said assistance. So how are SSI recipients supposed to bridge the gap to the poverty line? And how horrible does it sound that somebody has to make more money just to break the poverty line? If you are on one of the SSA's programs because you are disabled, they say there's some amount of money you can make and still qualify (I believe it's around $14,000 per year), but your benefits get reduced based on your earned income.

At the base income of $8529.32 per year, you may not be able to pay for your own living expenses, and you may still have to depend on other welfare programs like Food Stamps, Medicaid, and Energy Assistance. Even if you receive all this assistance, the money from your SSI may not pay your mortgage or rent. So after all that, I have to ask, what makes you secure, and are you social? I'm sure the government intends "social" to mean "part of society" rather than "having fun", but I'm not sure either of those is possible anyway. If you can barely afford to leave your house for essential things, how well do you fit into "society"?

So why is it called Social Security if you're not fully involved in society, and you're not secure? It sounds to me like somebody had to come up with a better name than "Better Than Nothing Payments" or "Public Moocher Payments". Not everybody on government assistance is trying to defraud the system, some people need anything they can get, but the criminals are the reason it is difficult for people in legitimate need to get help. Social Security needs to find the meaning of its own name.