Yes, it has been a while. Sometimes that happens when I run out of ideas or, as happened this time, when I’m just working through a spell of the blues. I try to ignore those, but let’s be real here. I live daily with crippling isolation and self-doubt. People who don’t know me assume I would be fine if I just took whatever random job is available, moved somewhere and took public transit, or “tried” a day program. I’m only allowed to save money and work under certain conditions, and modifications/accommodations are only available under certain conditions. It is enough to make you scream. As I’ve said during prayers, “God, I’d jump off a roof, but I can’t even get to a roof. And you know what? That’s not funny!”
But enough about that. Venting might be okay for a minute but it doesn’t get anything done, and I’ve missed my blog. More importantly, if I’m going through something like this, I’m sure thousands of other PWDs, maybe millions, are or have, too. I think today is a great day to do a review on basic human rights–which are disability rights, too.
These days, we hear a lot about disability rights. Well, maybe not a lot, which is its own issue, but more than we did a couple decades ago. We hear phrases like “all means all” promoting inclusive education around the world (way to go Australia, for recently standing up against a Federal Senator with a plan to “get rid of” the autistic students in your schools). We know about ADA, IDEA, IEPs, 504s, transition services, you name it. But really, in the day to day grind, what does the bill of disability rights actually look like? Here’s a wake-up call:
The Bill of Disability Rights as it Should Read:
- You have the right to a safe, clean, and loving environment.
- You have the right to an appropriate education.
- You have the right to apply for, interview for, and obtain the jobs you want. Within the workforce, you have the right to work for, apply for, and gain seniority and privileges.
- You have the right to hope for, expect, and build a relationship with a partner. You have the right to procreate and raise a family.
- You have the right to leisure opportunities of your choice.
- You have the right to accommodations and services as needed, when and where needed.
- You have the right to live without discrimination and bigotry.
- You have the right to be as inspirational and amazing as you want–or sit on your couch and eat Cheetos on a Saturday morning. You have the right to live your life without apology.
- You have the right to worship any deity you want, with or without the context of hope for healing, a cure, or a reincarnated life free from disability.
- You have the right to take on responsibilities, make decisions, change your mind, seek new opportunities, express emotions, and live life on your own terms.
- You have the right to protect yourself physically, mentally, emotionally, and spiritually. You have the right to privacy. Your body, mind, and soul belong first and foremost to you (or the deity of your choice, but hopefully that deity is also a proponent of protection as outlined above).
- You have the right to ask questions like “why,” “how,” and “what if.” You have the right to speak up for yourself and others, and discuss your experience. Just because you are more or less “disabled” than somebody else does not mean you don’t understand the “reality” of your own disability.
Now, you might think the reverse of this–disability rights as they exist in reality–is the exact opposite. As in, “You don’t have the right to an education because you can’t learn” or “You only have the right to an education if we say you can have it.” You might think the opposite is, “You have the right to procreate in theory but can’t really do it so we won’t talk about it.” Sometimes that’s true, but oftentimes, it’s a lot more complicated than that. And the more complicated basic human rights get, the more PWDs have to fight for them. It’s no wonder they get the blues. (At some point I may do a post about the depression and suicide rates of PWDs, but frankly, that topic is too emotional for me right now).
The truth is, the current bill of disability rights comes with lists of provisos longer than my arm. As in, you have the right to a safe, clean, loving environment, BECAUSE that’s all anybody should expect, and because that’s the easiest thing to provide. No matter how less-than-ideal that environment is, as long as you are cared for, clean, and not bleeding, you’re fine. Or how about, you have the right to apply for and get the jobs you want–if those jobs actually exist in your area, if a job coach can convince someone to consider you, and if those jobs actually work out for more than a few weeks or months? How about, you have the right to build relationships as long as there are people willing to go out of their way and be your “buddy” or “helper” first? THEN maybe you might work up to friendships and partnerships.
It’s just too much. We would never, ever do this to other human beings. They are afforded the rights we’ve talked about simply by being alive. If they’re not–if their countries are oppressive, for instance, or they’ve been abused–then the rest of the world becomes outraged. They step in for the people being denied basic rights and try to stop it. But when it comes to PWDs? Even and especially in the U.S., we say stuff like, “We’re doing the best we can; we just don’t have what you need; we can’t help you because your situation doesn’t fit the box.” Seriously, folks–if you’re not outraged, you’re not paying attention.
So to close out this little review, I’ve got some basic questions for you (see #12).
- Can I–can we–just get some basic human rights?
- Why are we casually disenfranchising our fellow humans?
- What is it going to take to change it? I’m one person, and one person can do a lot. But at some point 1 needs to become 25, then 50, then 100, then 1000, until somebody listens. Quite frankly, I’m a little worn out.
- How can we help our society see that whether or not it means to be, it’s still very much an ableist one? How will ableism end if we don’t call it what it is (more about this in a future post).
Let’s stop listing provisos and trying to make PWDs and their needs and wants fit perfectly into our molds. I’ve tried to do it to myself and I’ve watched other people do it. What tends to happen is a lot of squeezing, stretching, forcing, and groaning–and in the end something implodes or explodes. It can get pretty messy out there. We’ve acknowledged the mess, so let’s keep cleaning house.