Hello and happy December, readers,
To any Jewish readers celebrating Hanukkah, I hope your festivities have been wonderful and meaningful (and out of curiosity, are latkes a good complement to roast turkey? Note to self: have first experience with a latke ASAP; your taste buds will probably thank you). To those prepping for Christmas and Kwanzaa, my hopes are the same for our holidays. I hope that we all get the chance to see our wishes fulfilled, but also that we get to fulfill wishes for others.
Sometimes, though, wish fulfillment can be difficult. Why? Because among all the wishes for new technological gadgets, toys, clothes, and whatnot, some people have wishes that are simply not tangible. I’m talking about the veteran who wants to come home, but can’t because of his or her service contract (thanks so much to all of you for that sacrifice). I’m talking about the person who lost a loved one close to December and won’t be celebrating his or her holiday with that person this year, but would do just about anything to have that loved one back. I’m talking about the kid whose parents have divorced, who wants them back together, even if that’s not ultimately the best choice for the family. And yes, I’m talking about people with disabilities who wish for the intangible.
Of course, if you’ve been reading this blog for awhile, you might know what some wishes of PWDs are. They wish for independence. They wish for jobs, and friends, and romance–things that the temporarily able-bodied (TAB) world takes for granted. (As a person whose disability is mild, I’ll put myself right there in that category at times). However, are you aware that there is a wish lurking behind all those others, that is the crux of what PWDs not only want, but need? Well, there is. It is the wish to be seen, known, and treated, first and forever, as a person.
I’m not just talking about people-first language here, although that’s part of it. The truth, though, is that you can say the people-first words all you want, but if your actions don’t reinforce them, they don’t matter. Not to be harsh or offensive, but if you call a black person “black” or “African-American” to their face, but still think of and treat them as an N word, you might as well just get honest and call that person an N. It’s no different for people with disabilities.
I had this conversation just yesterday with a friend from church. She encouraged me by saying that my parents are a blessing, and I’m lucky to have them to live with. And she’s right. But the key is, she understood when I said, “Yeah. I guess what makes living with them hard is, people expect me to because I have a disability. It’s like, ‘of course people with disabilities will live with their parents as grown-ups.’ ‘Of course they won’t have jobs.’ Whatever. What’s hard is that to them, we’re not people.” And my friend agreed, because she, along with many others, sees the problems I see with the way PWDs are viewed.
You might challenge me on this one. You might claim that, as long as no one is abusing a PWD, treating him or her as an animal, then they are being treated as a person. If a PWD is warm, fed, and safe, why are they complaining about not being people? Well, let’s look at some ways PWDs can be viewed by the TAB world, that are not as people first. Think about it, folks. Have you ever seen or known of a PWD being treated as:
- A Problem: This is the person who looks at PWDs and sees an obstacle, or at worst, a headache. It’s the school in Maple Hill, Canada, who barred a boy with autism from attending because his needed modifications were too much to handle (yes, this really happened, and to that school: shame on you). It’s the youth leader who “kindly” suggests that John or Jane shouldn’t come to this activity because the leaders are not prepared to take responsibility. It’s the kids who leave out their classmate with a disability because “what can you really do when he/she is around?” It’s real. It’s sometimes abusive. And it hurts.
- A Project: This is the overzealous therapist or doctor who keeps promising parents or caregivers that if Benny does X exercise, just tries a little harder, and so on, someday he will walk or talk the “normal” way. This is the teacher, in the regular or often special ed classroom, who pushes and pushes for Deanna to learn how to write, even though all the other kids get to use computers. Sometimes, this is even Mom and Dad, who are so scared that their child will be teased and ostracized, they go at Mission: Normal with the tenacity of the FBI tracking down an international drug smuggler. Or sometimes, it’s the classmates who don’t understand Grace’s modifications, so they push her to do this, learn that, or be more like them, at recess, lunch, or wherever. Yes, it’s true. PWDs want to be as much like everyone else as possible–but that does not mean, and has never meant, doing everything the TAB way or no way at all (which often means segregation and watered-down “lessons,” or a frustrated TAB person saying, “Fine, you don’t want to learn? Just be dependent all your life!” (To those who are interested, that’s called making the PWD a “straw man.”)
- A Prisoner: This is the person who believes PWDs are better off being segregated in special classrooms, homes, activities, or institutions, whether they want to be or not. Sometimes, this person is abusive; they hurt the PWD, or let others do it, because they think they’ll get off scot-free. Or sometimes, it’s just someone in the PWD’s life who speaks gloom and doom prophecies over him or her, sometimes without knowing what they’re doing. For example, in Educating Peter (remember that one?) Peter’s third-grade teacher says on camera that Peter “will not have a future like [his classmates] have.” Was she trying to be cruel? No. But her words have helped reinforce an image of Peter as defined by Down’s Syndrome. A prisoner of disability.
- A Prayer Need: Yes, people with disabilities need prayer. All of humanity does (apologies if you’re an atheist, but I happen to think we could all use intervention from on high). But sometimes, that need gets twisted. The person who views PWDs as a “prayer need” and only that, is often in full pity mode. They don’t notice PWDs unless it’s to feel bad for them or express hope for cures. They “lift them up” in prayer, but don’t otherwise spend time with them. Or, they use their prayers and charitable actions toward PWDs as a way to make themselves feel good. P.S.–you don’t need to pray to be this person. Donations to charities, token visits once a month (if you can honestly do more, but choose not to) and things of that ilk count, too. On a personal note: I appreciate your prayers. But I need the presence and understanding of people even more.
- A Prince or Princess: And no, I’m not talking about a parent who views their child is excellent and special. I’m talking here about the person who thinks the PWD will break if he or she takes any risks or interacts with the TAB population in any way. I’m also talking about people who spoil or discourage the PWD, thereby reinforcing the message of, “I can’t, because I’m special.” This is often an innocent mistake, but I wish people would not make it. It’s of no benefit to the PWD, or to the TAB person making the mistake.
So, this holiday season, when you look at PWDs, please remember, we are people. We want the same presents you do. We love holiday parties and food, too. We want to be included in the festivities, and welcome there (not treated as a problem and fussed over or about all night). And while we appreciate your presents, we most want your presence with us–and for you to want to be present with us, and enjoy it.