I had an interesting experience recently. On a disability advocacy group I am on, someone posted about a hotel for a vacation their family had booked. The website claimed that it was accessible, but when the family arrived, the hotel was not accessible for their child in a wheelchair and the family had to change all of their plans last minute to accommodate. All of their meticulous planning on location and travel time to the destination from the hotel were thrown off, and they spent most of the first day dealing with it.
But wait- that wasn’t even the worst part! Most families with a disabled family member are used to being highly adaptable, and they rolled with it (pun intended). They filed a complaint with the OCR (Office of Civil Rights) and then posted in our group to vent about lack of accessibility to people who would understand.
BUT THEN- someone commented and said that if the family was still able to have a vacation, so end goal achieved. They asked why the family would make a fuss and file a complaint; no harm had been done long term, so it wasn’t worth making a big deal about it, and that they should just be grateful that they got a vacation.
First, I was floored by that comment. Mostly, I was shocked that on a group dedicated to disability advocacy, a member of the group would be the one to say that! I have heard similar comments before; it isn’t a mystery that when you haven’t personally dealt with accessibility issues, it can be hard to understand the gravity of the situation. It isn’t about what you get in the end. It is about inclusion and accessibility along the way.
Let me try an illustrate with an analogy. Using this person’s same logic, I could say that during the time of segregated schools in our country based on skin color, black people had no reason to fuss, because they were still able to attend school. They should just be grateful that they got an education, right?
Wow, feels gross to think of it that way, doesn’t it? THAT is what we mean when we say that we want our children included. THAT is how it feels when businesses effectively say to our families, “You are not welcome here because of your disability. Go be with your own kind.”
Dramatic? Maybe. But that is how it feels to us. If anyone is ever struggling to determine if something is discrimination or not, swap out disability for race or religion or sex and see how it sounds. “Catholics can’t use this bathroom” or “Girls can’t take woodworking in school,” or “Asians aren’t allowed at this hotel.”
My children with disabilities are not in wheelchairs, so I don’t navigate with the physical disability/ mobility aspect of accessibility often, but this mentality could be applied to any accessibility issue- “Don’t make a big fuss about this; it isn’t a big deal. Don’t make waves because of a minor inconvenience.”
Example- my daughter is about to go into Junior High. In junior high school here in our school district, students are allowed to choose an elective- band, choir, theatre, etc. I waited for weeks after the new year to get the course selection page, but nothing came home, even after I knew that other students in general education received the form. I finally got hold of my daughter’s teacher to ask about it, and was told that Life Skills students are always automatically signed up for art.
I was angry. How dare they strip my daughter of her ability to make a decision for herself? It is assumed that “normal” kids can choose for themselves, but clearly *insert sarcastic tone of voice* children in life skills would only be interested in art, not like they can do anything else other than color pictures, right? Again, feels gross to say it like that, and to assume that kids with IDD can’t do anything other than scribble and don’t have varied interests. That belief is called ableism, folks, and lets have none of that!
Children with Intellectual Disability have just as passionate of interests as any other person. They just tend to have better attitudes and may not realize what they are missing out on, so they are easy to push around. Also, for the record, my child HATES art, so why on earth would she want to take that?
I sat down with my daughter and I wrote out a list of all the options for electives offered at the school (that I looked up online because I still hadn’t been provided with a form). My daughter picked cooking straightaway and without hesitation. When I contacted the school to say that she wanted to take Home Economics, I was treated (by many people, but certainly not all) like my request was a HUGE inconvenience. Without coming straight out to say it, their message was- if only I would just accept what was offered with a good attitude, I would make their job easier.
The overpowering message I receive when people moan and groan about me standing up for my child is that they don’t think my child isn’t worth the effort to be seen. It is more important to them that they don’t have a deal with an additional fifteen minute conversation and sending a couple emails. Who cares if it comes at the expense of one ten year old girl’s happiness in sixth grade? It saved them a phone call TODAY.
(Brace yourself- *here comes Snarky Sarcastic Mary*) Woooow. I can’t imagine how difficult it must be for you to take an extra fifteen minutes this week to set up reasonable accommodations for a disabled child. Thank goodness you don’t have to deal with this every day. Imagine if that disabled child was your little girl and you felt like you had to get out of bed every morning with ten times the amount of passion and drive a “normal” person has in order to advocate for your kid at the school, with insurance, with doctors, with government programs, in the community… 15 whole minutes this week? Poor baby.
Okay, that was a little mean there. *Real Mary comes back* In reality, I do know most people at schools and in special education are there because they love these kids and want what is best for them, and sometimes their hands are tied. People are creatures of habit, and I do understand that it is easy to fall into the trap of doing the same thing over and over, not out of malice, but out of habit. It gets comfortable knowing what to suggest for the next round of sixth grade IEPs.
But lets have the courage to break the cycle and really examine our actions to see if we are operating based on “that is just the way things are done” or if we are truly seeking to help each person with disabilities reach their fullest potential and live a fulfilled life.
Long rant over now. Yes, families with disabled kids/ family members can get loud. We can be incredibly obnoxious and people can feel like they are being pecked to death by ducks because we wont. go. away. But we only want our children to have EQUAL rights to non-disabled people. Yes, that might make someone slightly uncomfortable because again, we are creatures of habit and don’t like doing new things. But please understand that I would not be able to sleep at night if I saw injustice being done to my child and did nothing. So I WILL say something, and this IS a big deal to me.
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