So, the first question on your mind must be, where have I been? I’m here, but I ran out of ideas for awhile. And frankly, I didn’t feel much like writing. Disability rights and the issues pertaining to them are all around me, but sometimes I just can’t confront them. I can’t deal with the mixture of frustration, anger, fear, hope, confidence, and the vague feeling that I’m crazy for continuing to talk about this when very few others seem to care. I can’t deal with the idea that the majority of people don’t even think about disability rights unless they’ve been personally affected. I can’t keep going on alone. Sometimes I need a good, long sabbatical.
Well, I had one and now I’m back, with a radical and thorny question. This question formed in my mind a while ago, but didn’t return to the surface until a few days ago.
I’m still reading the Harry Potter series for the first time; I’m now up to Goblet of Fire. If you’re a Potterhead, you might know Goblet is the book in which Hermione becomes aware of how House Elves live their lives. She’s absolutely disgusted at what she witnesses and considers House Elves’ work slave labor.
By modern American standards–most modern world standards, I’d hazard to guess–Hermione is right. House Elves are, no other way to say it, treated like crap. They aren’t paid for their work or given any other benefits (sick leave, healthcare, vacations, you name it). Their masters and mistresses own them, and can force the elves to do their bidding even if said bidding frightens the elves (see the case of Winky). Elves can be forced to do things that are ethically and morally wrong. They can be blamed for anything and everything, and when they are “bad,” they must severely punish themselves (see Dobby as an example). House Elves go around wearing things like pillowcases and tea towels because they aren’t even afforded clothing. It’s no wonder Hermione dedicates herself to the Society for the Promotion of Elfish Welfare (SPEW). I’ve gotta say, maybe it’s the American Muggle in me, but I admire her for her stand.
There’s only one problem with Hermione’s new crusade. According to Ron, the other students at Hogwarts, and almost any other wizard she talks to, it’s a lost cause. House Elves apparently like being enslaved. If anything, they fear freedom because they can’t function in it; those who try end up putting themselves in potentially mortal danger. A good House Elf would never dream of any other life; as Winky explains to Harry and friends, the life of a House Elf is supposed to be pretty miserable. According to Winky, Dobby, and most of the rest of the Wizarding World, a House Elf is happy being treated like crap.
Now, before we go any further, I want to clarify something. My intention is not to compare real, non-magical persons with disabilities to enslaved House Elves. Considering the way House Elves dress, speak, and conduct themselves in general, that would probably be insulting. But I am comparing the lives of persons with disabilities to the situations of House Elves. In other words: the temporarily able-bodied world, in one way or another, often treats PWDs like crap. TAB people expect persons with disabilities to live and behave like second-class citizens and justify this attitude with statements like, “Well, what do you expect us to do, just throw them out in the world and say, ‘Go live independently?’ They’d never make it!” The TAB world has convinced itself that PWDs are happy being treated as they are. They are happy in stagnant situations that may never change, such as living below poverty level, waiting for years on end for help and services, etc.
And are they? If I’m going to be a responsible advocate, I have to ask: have I been wrong all this time? Am I as misguided as Harry, Ron, and Co. think Hermione is? Do I see problems that aren’t there?
Sometimes I think so. There are several people with severe cognitive disabilities who go to my church, and I know most by name. Since I myself don’t get out much, I rarely see these individuals outside church. But when they’re there, I see they are happy. They not only worship–they jump around and rock and dance like I think we all wish we could but wouldn’t dare to because it looks “weird.” They praise God for the tiniest things. They shout out in church right over the pastor and nobody cares. They say things that are inappropriate to the moment–but they don’t know that. Or if do, they don’t give a rip what you think! These people–T, L, J, A, and so many like them–they know what it means to worship and embrace Christ with abandon. They have the simplest and most enthusiastic belief I have ever seen.
It’s easy for me to look at these brothers and sisters in Christ and think, “Why am I fighting so hard for things to be different? They seem happy. I’d be bored to tears doing the jobs they can probably do–but they love those jobs. They’re used to living with caregivers, parents, whoever, and might even like it. They love the people who take care of them and consider them true friends. So why am I poking my nose into disability advocacy at all? Am I just SPEW-ing bitterness because my life isn’t how I want it to be?”
It doesn’t even have to be that personal. I’ve read articles about young people my age who do the most menial jobs for little to no pay, or who live in institutions, and their families always say the same things. “He/she is so happy.” “He/she is proud to do this.” “I’m so happy he/she has a place in the community.”
Guys, it makes me feel like a witch (G-rated version of how I really feel, so fill it in). It makes me feel like I am personally trying to diminish other people’s happiness. I question, am I bringing lumos to the situations of people with disabilities, or am I just vomiting up slugs? I’ve asked myself and others: What’s wrong with me? Why can’t I be like Lucy, or Travis, or Johnny? Why can’t I be happy packing boxes or sweeping floors? Why can’t I willingly, contentedly move into a group home? Why does the thought of living with my parents or family members forever, make me anything but joyful? WHY?
Thankfully, my heart found an answer. I want to clarify that it’s my answer, not yours. Your answer, and the one for your loved one, is probably a little different. But here it is.
-I cannot be happy living the life of another PWD because I am not that person and that’s not my life. Just because I want more than a menial job and a life with a caregiver doesn’t make me a snob. It makes me aware of my physical and mental capabilities in addition to limitations. Every PWD was created for a different life, and they have the right to be happy in the life that works for them. You can’t expect everyone to go to Harvard or win the Paralympics, but nor can you expect everyone to pack boxes.
-Yes, some PWDs are already happy with what they have in terms of jobs, living arrangements, leisure time, etc. And if they are happy, no one has the right to tell them they’re not. Unless the PWD is in imminent danger, or not living up to his or her full potential, we don’t need SPEW-like changes. We don’t need to get our panties in a wad.
-Despite this, other PWDs do want more. They recognize their rights are constantly and consistently ignored or violated. They recognize the world is not built for them. For those people, even and especially the ones who can’t say the words, we as advocates must keep working.
-Some PWDs are happy in what a typical person would consider a less than ideal situation. Others are not. But happiness is not the main issue here. The main issue is, are we letting PWDs create and live the lives that work for them? There is no excuse for bigotry and prejudice toward PWDs. There is no excuse for treating them like slaves and assuming they can’t function unless they are completely controlled. And God help you if you use, “But he/she is happy like this” as a justification. I’m coming to believe that a person who thinks temporal happiness is the be all, end all, actually has a sad view of the world.
People with disabilities are people, not house elves. So yes, be careful what you say; don’t “spew” things or try to micromanage somebody else’s life. Assume absolutely nothing–except competence, personhood, and the need for happiness. That’s much better than giving a PWD a metaphorical sock. When you assume competence and personhood, you give PWDs the avenues to real and lasting happiness.