Oh, my goodness, readers, where have I been? Well, I’ll tell you where I’ve been–redoing, for the third time, my second full-length novel in order to get it published this winter. Plus, the recent government shutdown has thrown off my internal clock and personal schedule. But I have not disappeared completely. Sometimes it’s just a matter of deciding what to post and when. So, as a way of reorienting myself to the blogosphere, here is today’s topic:
“Just for Me”: Blessing or Curse?
Here, I’m not talking about segregated classrooms or job sites that are billed as “just for” people with disabilities. We’ve seen the dark sides of those already. I’m talking more about the “just for PWDs” phenomenon that you’re likely to see in the everyday world. For example, Halloween is approaching. On the surface, it’s a fun holiday for kids and adults alike. You get to dress up in creative costumes–always my favorite part–gorge on candy, and depending on how you feel about this sort of thing, indulge in a good scare. But for some people with disabilities, Halloween can be really scary. If you have autism, Halloween could mean sensory overload in the extreme. For someone with an intellectual disability, it could be disconcerting at best to see the friendly faces you’re familiar with around town morph into frightening beings. (Even if someone’s costume isn’t traditionally frightening, many can be colorful, loud, or flashy enough to be off-putting). People with physical disabilities could miss out because navigating a dark, obstacle-filled neighborhood to trick-or-treat, or an unfamiliar house to go to a party, could prove difficult at best.
So, what to do? There are some organizations, such as shopping malls, that would suggest hosting a celebration only for PWDs. (You might also see these organizations hosting a separate “meet Santa” event for kids with disabilities at Christmas, or a separate carnival during the summer, or–you fill in the blank). And on the surface, this isn’t a bad idea. The intention is not to segregate or make anyone feel bad. In fact, the intention is to make sure PWDs of all ages get to enjoy the same things everyone else does without worrying about the effects of said disability at every turn. I went to a summer camp like this as a kid, and because all the kids were assigned an individual counselor to see to their needs, I didn’t feel like an anomaly. Such “just for me” setups don’t have to be bad. But as with too many things in the world of disability, the difference between inclusion and segregation all depends on how these setups are handled. Because the line between inclusion and segregation in the world of disability is a thin, ever-shifting line. Sometimes it can be as treacherous as those swinging bridges or trapdoors you sometimes find in haunted houses or haunted mazes.
So, how do you know when a “just for me” event is inclusive, and when it’s segregated? The answer is deceptively simple: are people without disabilities (other than parents or aides) participating, too? Too often, the answer is “No, because this event, this place, this whatever, is meant only for people with disabilities.” Sometimes, the event is only meant for one type of disability, such as autism or sensory processing disorders. Unfortunately, what you get there is an example of reverse discrimination, or positive segregation. You also get yet another example of the “mainstream” world drawing a line between “us” and “them.” As if people are saying, “You can’t benefit from this because you’re NOT disabled!” Ironic, eh?
Of course, the argument here is that celebratory atmospheres like Halloween or Christmas parties are by definition not disability-friendly. They’re loud. They’re flashy. They have physical aspects that shouldn’t be “pared down” just because one participant out of ten, a hundred, or even a thousand, has a disability. But what those who make this argument forget, or choose to ignore, is that in refusing to modify on the grounds of, “Modifications would wreck this event” shuts a whole group of people out. And as we’ve discussed countless times before, having a disability does not preclude someone from wanting to have fun.
The question becomes then, is there a happy medium between “just for me” and “no modifications at all?” Sadly, at very large events, there might not be–yet. But that doesn’t mean those large events can’t, or shouldn’t, change, or that individuals can’t help that happen. In the meantime, I would urge readers with disabilities, or loved ones of those with them, to work on change at the local level. For example, let’s say that the big event in your town this Halloween is trick-or-treating, but your child with a disability is hesitant about going for reasons I explained above. Try these ideas:
- For someone with a physical disability: Ask if the trick-or-treat giver, or party host, can come outside the house and either hand out treats there or discreetly escort your guest inside, past any obstacles. (Note, this doesn’t mean your neighbor has to go out and put up a ramp or rearrange his or her whole house–it’s just a modicum of extra effort and consideration)
- If someone’s disability means costumes are a little freakier than usual: Ask if your loved one can come and see the costumed person getting ready for the festivities, so he or she will more easily remember that that person is sweet old Mr. Smith, not a real vampire. Or costume-wearers could briefly break character to greet the person with a disability in a more “everyday” way (without having to sacrifice the costume or makeup because one or two people might be scared, which some people with disabilities might fear happening)
- For someone with autism or sensory processing issues: This one might be trickier, because things that assault the five senses are everywhere, especially in a celebratory atmosphere. Try obtaining a rough schedule of the event ahead of time. For example, if you’re taking someone with autism to an elaborate party or a performance, ask someone on the “inside” to provide cues for when, say, the lights might go out unexpectedly, a loud noise will occur, and so forth. Also, make sure your loved one’s personal sensory experience is comfortable (e.g., no itchy or confining clothes if that’s an issue).
I hope these examples are showing that “all or nothing” thinking doesn’t have to mar one’s celebration of any holiday or happy time. Even if the environment is not classically “disability friendly,” there are plenty of small things individual people can do to make sure everyone is included. So don’t let modifications scare you this season. They’re less intimidating than they look, and at the end of the night, they provide more treats than tricks.