Are You a Disability Tourist?
“You must be the change you wish to see in the world.”
I’m taking a year long training program to become a Certified Special Education Advocate. I like my instructor. Like, really like her. If I’m being honest, the first class or two, I found her to be a bit, um, abrupt with us. But now I just adore her and understand that if she wasn’t black & white about staying on topic and to the point, we’d never get through the class.
In a recent class, we talked a lot about inclusion. And what is inclusion vs. mainstreaming and so on. But she said a phrase that was just another one of those “D’oh!” moments for me. I love when I have an idea or concept rolling around in my head and someone else names it for me. It helps me make room for other stuff. But here’s the phrase: Disability Tourist.
Ok, so for those of you saying “What's that?” here’s some background. In the past few years a similar term called “Poverty tourism” has emerged. The idea is that you go tour an area of extreme poverty. And while it initially sounds very voyeuristic, the hope is that you walk away motivated to help change the world. Or at least the situation of the people you saw. It’s an idea becoming quite popular in slums in India, Brazil and Africa. But here’s the thing-how many of those poverty tourists are actually doing anything to facilitate change? I don’t know and can’t find any statistics to support it. But I do know that for the most part, there still is a significant portion of poverty in our world. I’m thinking that probably, most people go home, make a donation and then go on with their lives.
Let’s translate it over to the special needs community. How many of you (as special needs parents) have met a disability tourist? I can tell you that even though I’ve only been immersed in the special needs community for 5 years, I’ve met dozens. You have too. The conversation goes like this: For whatever reason, your child’s disability or condition gets mentioned to someone. They nod and say “Oh, ok, I think someone I work with (my niece’s next door neighbor/insert any other acquaintance’s acquaintance here) has autism (or whatever condition you just said).” And then a few other niceties are exchanged and you both go on with your day.
First, don’t get me wrong. I understand that you (as a possible disability tourist) are just trying to find common ground. And I don’t expect that you invite over every stranger that you are introduced to. I get that. I also understand that when I said those words “My child has………” that it makes you afraid. You don’t know what to say. I know this because it happens to all of us. It’s not fun to talk about things that are negative. So we avoid it.
But, are you a Disability Tourist? Do you “know someone with autism” or “know someone with Downs” but at the same time, they’ve never been to your home? Have you ever been on an outing with them or invited them to your child’s party or event? Do you think about including a person or family and then think, that because of the disability that is in their household, “Oh, they probably wouldn’t want to go.” Maybe we do want to go. Ask.
That’s what this post is — I’m asking all of you Disability Tourists to step out of your comfort zone. Invite us. Include us. That’s all we’re asking. And in return, I will ask all my special needs friends to make an extra effort when they are included. Yes, it is much easier for us to stay home than to try to think about attending a noisy birthday party. We’re parents — we’re not going to put you or our children in any situation that is potentially unsafe for you. We know our limits. And while not every child can participate in a party at a bounce house, they may still delight in watching others do it. My child may not be able to eat a single thing that you serve, but I’ve been through this before and I guarantee you I have a packed lunch box in the car, just in case.
As parents we are aware that our child may act up during movies, but please still invite us to such outings. We know to sit near the back and exit when we are bothering others. But we just want a chance to get it right. Because there is a chance that my child may gobble up everything you serve and ask for more, or sit quietly through an entire film or be able to enjoy the entire party. And that would mean the world to us. It’s those small victories, those glimpses of normalcy, that get us through. And make it easier for the next person.
A Bit of Extra Work
Yesterday one of my friends stopped by and she has two young boys on the autism spectrum. At the end of her visit, they started to, as she put it, “act like a cat trying to be put in a cat carrier when I try to get him in the minivan.” Which is very funny, but at the same time, very difficult. Because that is exactly what she was dealing with — two young boys refusing to get into the car and ones that have the dexterity to undo seatbelts. She apologized several times and I finally I said “C, it’s me. I get it. You don’t have to apologize to me.”
We’re sick of apologizing. We want everyone to "get it." Our children sometimes act in ways that are “not socially acceptable.” But we still want to be included and we want you to be as forgiving with us as we are with each other. We understand that because of feeding issues or allergies or sensory issues or equipment that we have to drag along with us, that to include us often means a bit of extra work. We’re asking you to do that bit of work. We know we segregate ourselves at times, really we do. But we do it because it’s easier. I’m willing to step out of my comfort zone if you are. We don’t both need to go the extra mile, if we’re both willing to go the extra half-mile and meet in the middle. Can we do that? Because in the long run it benefits everyone. Not just me, not just my kid. All of us.
Talk to your children. Ask them — is there someone at school who is always being picked on or bullied? Is there a classmate that never has anyone to sit with at lunch or play with on the playground? Encourage them to reach out and include that person. I understand the power of peer pressure, really I do. But we have to start somewhere. My course instructor has told us the story of how her son (on the spectrum) was routinely excluded from their church youth social group. One time, they told the group that they were going to have a special guest speaker — someone who was a Junior Olympian in skating. And not the Special Olympics, the actual Junior Olympics. Well, weren’t they all surprised to learn that it was this fellow group member that they regularly excluded, only because he was socially awkward?!
It proves two points — one is that you really never know the person you are excluding. But my second thought is, should this kid really have to become a Junior Olympian, in order to prove his worth to them? No! Can they really not see value in a person that is different from them? Once you become the pacesetter and including us in all of your social outings, all of your scout troops, all of your other special groups & clubs, it will start to seem normal. As it should be.
Stop being a tourist. Come on in, kick your shoes off, stay a while. Make it your second home, not just a tourist destination.
Life should look like a Sesame Street episode — all races, colors, disabilities and everything else — all playing nicely together. But let’s get out of the TV and do it.
Lisa Lightner is a Chester County, PA mom of two. She co-authors A Day in Our Shoes, a blog of support, resources and advocacy services for parents of children with special needs.