Friday, May 1, 2009

Special People, Normal World

Please note that this is my post for Blogging Against Disablism Day. Yes, I know what you're thinking: "Huh? BADD? Already?". I know-I was shocked too. Time flies when you're having fun! Or when you're a stressed out high school junior obsessing over SATs! So, without further ado...my BADD post.




Blogging Against Disablism Day, May 1st 2009




Recently, I got an email through my cerebralpalsynetwork Yahoo group about a new "faith based reality show" about people with disabilities. Naturally, I was interested...until I clicked open the email and saw that the title of the show was "Special People, Normal World".

The name alone made me want to bang my head against the table. It's obviously a horrible play on the name of the popular reality show "Little People, Big World" which deals with disability issues sometimes, since both parents and one of their four children are little people. Now, don't get me wrong, I love "Little People, Big World"; it's one of my favorite shows. But "Little People, Big World" doesn't focus entirely on disability. And it doesn't try and hide it, either. Disability is simply THERE, and if it comes up, it comes up. I like that. This new show doesn't seem to have any of those qualities I just mentioned...it's completely focused on disability. Which is not necessarily a bad thing, if disability is portrayed in the right way.

I want to talk more about the name. The word "special" makes me cringe. I know I've talked about this on this blog before. One of the definitions of "special" from dictionary.com is "extraordinary; exceptional, as in amount or degree". This makes me so angry; it's exactly the opposite of what disabled people have worked to achieve. We're trying to NOT stand out in society, we're trying to fit in! We all have our differences, true. But, in the immortal words of my favorite Trisha Yearwood song: "With all these ways to be different, then maybe that's how you fit in". When people call us "special", they're singling us out. We might as well have a big blinking neon sign above our heads that says "freak". And the contrast of the name-"Special People, Normal World" seems to imply that we are NOT normal, and we never will be. The word "normal" is disturbingly subjective. In my opinion, I AM normal, in my own way. CP IS normal for me. The title of this show seems to be pointing a finger at us, telling us that we're not normal, and it's not right for us to not be normal.

So with all that in mind, I proceeded to go to the
website and watch the "sneak peek" of the show.

Kristi, the host of this show, starts off the sneak peek with a description of her own experiences raising a child with a mitochondrial disease. She says: "Doctors were telling me to take my angel home...and love her for the way that she was...I refused to accept this for my daughter." Obviously she didn't mean the comment to come off this way, but it seems like she's saying that she cannot love her daughter the way she is...with a disability. Once again, there's that feeling that there's something inherently wrong with being disabled. There's NOTHING wrong with being disabled! To quote the great Neil Marcus, "Disability is not a 'brave struggle' or 'courage in the face of adversity...disability is an art. It's an ingenious way to live." Whatever our disabilities may be, it's just the way we are.

One more thing about the sneak peek upset me. One aspect of the show consists of Kristi meeting other families who have children with disabilities. She brings up the example of "Garrett...a little boy who refuses to give up on his fight with cerebral palsy". I hate the phrase "fight with cerebral palsy". I don't know how it is for other disabilities, and I cannot speak for any CPer other than myself, but personally, I don't feel I'm "fighting" against my CP. My CP is part of me and I love having it. I wouldn't trade my CP for anything. I do not have to "overcome" my disability (another word I despise). What I'm fighting against, what I have to overcome, is people's misguided attitudes and stereotypes about me.

What really annoyed me were the comments on Special People, Normal World's
Facebook page. Everyone seems to be praising this show without a thought to how disabled people are portrayed on it. The Facebook page proclaims "It's about time!" for a show like this. Yes, it's about time that a show focusing on people with disabilities is created. But "Special People, Normal World" is propelling negative attitudes and stereotypes about people with disabilities, and that's not right. A show that spouts that kind of misguided crap is worse than no show at all. And that's why this new "faith based reality show" is worthy of my BADD post. This show is blatant disablism, whether the creators of the show realize it or not. I will not support the show just because it is about disabled people. When it starts portraying people with disabilities in a more truthful light (and quite possibly get rid of that godawful name), that's when I'll say "It's about time".

7 comments :

Wheelie Catholic said...

Great post. I hate those kinds of titles too.

Lisa said...

*headdesk*

Spaz Girl said...

Lisa-I know, that was my first response, too.

Never That Easy said...

Ditto, Lisa.

The thing is, it really is time for shows that portray disabled people in normal lights, but this show definitely falls waaaay short.

Garrett's Nana said...

Hello all.. I'd like to address some of the concerns mentioned in this blog.

I am Garrett's nana.. sweet child.. I have 5 other's as well.. all special in their own way.. and that is what the name of the show was intended to convey.. we are all special.. in a normal world.. normal is defined as what is normal for each person.. me .. normal is that I lock my keys in my car.. not so normal for my husband.. he can't understand how I forget and to this ..

Garrett has worked so hard in PT and OT to work the tightness from his legs so that he can run and play with his friends. He very much wanted to be a soccer player.. we told him.. well be a soccer player.. he responded "I can?" we said sure.. so on April 11, 2009 he did played in his first soccer game.. had a blast. He "fights" for lack of a better word.. if he didn't he would not be able to walk. In the show they will share how it takes more than just putting on the uniform for him to play a game or attend practice.

When Kristi said she refused to accept this for her daughter.. the doctors had told her to take her daughter home and just let her die.. parents of child that have been told "just take her home and love her" know that the doctor is telling them to take their child home and watch them die.. I can see how an adult with a disability would not make this connection.. her daughter had maybe 6 months or more.. Kristi's comment was meant to convey that she was not going to give up.. she was going to continue to search for help for Mayci Shea.. and good thing.. cause she found "hope".. Mayci Shea is up to 50 pounds now.. growing strength in her legs and arms.. eating by mouth.. beginning to crawl and communicate. This was a sneak peek .. in the first episode it will go into more detail..

The show is to reflect the day to day struggle that the parents and children go through.. I know my daughter makes endless phone calls.. Garrett has I think 5 specialist that she has to juggle.. everyday she spends a min. of 1 to 2 hours scheduling.. while at the same time she looks for opportunities for Garrett to do fun things that are appropriate for him.. they want to show that Garrett is a typical 5 year old that wants to run and play and his mom is typical mom that wants everything for him..

The show is also a place for parents to come to share information.. what's working for them.. I know I watched my daughter feel like she was alone in her search for what would help Garrett.. she loves him for him.. but had we not searched and found the therapies that we did he would be in a wheelchair now.. we would love him all the same.. but he LOVES the fact that for now he can walk.. run and play independently.. and we'll continue to search for what will help him be able to enjoy that Independence for as along as he can.. not for our acceptance.. but for him.

The blog entry is free speech.. I care more about the fact that you were offended .. I want you to know that alot has gone into planning this show.. it was never intended to offend.. it is an effort to come from the perspective of the parents that want help their children in anyway they can.. and while being a parent is a full time job.. there is a hugh group of people in the world that do not realize all that goes into raising a child with a disability.

As for the name of the show.. well.. you will never know how hard that was.. they wanted to have a name that would allow them to address childhood diseases/conditions and those that affect older people. All the other ones that came up did not seem to fit.

They are showing that disabled children want the same as any other child.. they want to run and play.. join in organized sports.. the kids on Garrett's team have accepted him and make no big deal on how he runs different.. they just get out there and play.. they don't see that he has about an hour of PT before the game so that he can to that without hurting himself. However.. in our area there are not opportunities for him to play basketball.. his balance is not great.. and to put him on a court with kids bumping into him would be putting him in harms way for injury.. he actually did collide with another child on the soccer field.. tore a legiment which put him in a wheelchair for 2 weeks.. he wanted to return to his team.. so he did. it was his choice.

My radar is also up for negative things coming Garrett's way.. there are cruel people out there.. I've experienced it with him.. but this show is not one of them.. they really are trying .. and this show is more for the parents really I guess.. a place of support, information and sharing their own real experiences. As parents and grandparents of disabled kids.. they really do not know what it's like to be an adult with a disability. Two different perspectives there.

So I'd like to ask that you offer suggestions to the the show from your perspective.. I think you will be pleasantly surprised that they do care and want to hear from you...

Infact I can guarantee it.. you see.. I am the creator of the show.. I've watched my daughter.. Garrett's mother ask questions.. make phone calls.. searching for what will give Garrett the best chance for an independent life.. to be able to have the most mobility that he can.. involve him in activities that he wants.. support his desires and show him that he can accomplish all that he wants to .. while he might run from one end of the field to the other like the other kids he will do it they way he can do it.. and that's ok.. we are all different in a zillion ways.. that's NORMAL for some to be better in somethings and not so good in others.. some people are good at remembering things.. me.. I can't ever find my keys.. can't remember where I put them.. but Garrett.. if we can't find his sister's sippy cup.. he knows right where it is..

I want to thank you for showing me that there are two perspectives.. the parents of a disabled and one from when that child becomes an adult.. maybe you'd consider doing an interview for the show.. and help us.. see things from your perspective. We haven't even gotten a full episode out the door .. this like anything else is a work in progress.. maybe that would have been a good name "Work in Progress"

It was never our desire to offend.. just do a show from the only perspective that we have.. that of mothers and grand mothers of children with a disability. It was never our intent to offend or hurt anyone.

Either way.. I look forward to hearing from you !

You can email me @ Susan@specialpeoplenormalworld.com

Garrett's Nana said...

Ok.. so I read your profile AFTER I sent my comment.. which would be "normal" for some .. not so normal for me apparently.. your a teenager.. a soon to be adult.. even better.. we need input from all ages.. so talk with your folks and see if it would be ok for you and them to be on the show.. we do all our interviews via skype .. and we can do it at a time of day that's good for your family.

Andrea S. said...

Garrett's Nana:

I'm glad to see you posting in this comments thread. I'm a deaf adult (39 years old) with attention deficit disorder. The word "normal" when used to refer to non-disabled people has always bothered me since childhood ... see, the opposite of "normal" is ABnormal. It's hard not to feel like, if other people are defined as "normal" then, er, wouldn't that make me ABnormal? To me it's a very judgmental label. I'm just as "normal" as everyone else, it's just that I happen to judge "normal" by a different yard stick.

The word "special" bothers me too. I don't necessarily mind being different but I want to be different on MY terms, not the terms of non-disabled people who can't understand my experiences from the inside. For some reason, many parents and some educators seem to like the term and use it a lot. Frankly I think most of them haven't really spent a lot of time around adults (or teens) with disabilities or they just wouldn't be using that term. I have had contact with probably easily thousands of adults with disabilities not only across the US but also in dozens of countries around the world, both on-line and in person, and I just don't see adults with disabilities describing themselves as "special." This is something I see only parents do, usually parents of young children still in school. Or else, people in the so-called "special education" field.

So, yes, the very title of the show (and the first I heard of it is through this blog so the only other information I know about it is what I read here) bothers me.

Also, it sounds like the show is focused at least partly on dealing with the disability itself. It's not necessarily wrong to have content that is about things like PT and OT and so on (or if you had deaf kids in the show, then I guess you'd be showing speech therapy etc.) ... these things *are* a part of life for children with disabilities even if they are really very boring for us to think about (because for us, that's *our* "normal" even if it does involve hard work).

But if you really want to help viewers understand the total experience of living life as people with disabilities then you also have to show all the stuff that has nothing to do with disability. Because, really, most of our lives, for most of us people with most types of disabilities, have very little to do with our disabilities. Sure, some of our activities might be shaped somewhat by our disabilities, but once we've made those adaptations we don't really think about them much.

And then the other aspect you have to show is the reaction of OTHER people toward disabilities. Because those often have a more significant impact on our lives than the disabilities themselves.

I honestly don't think anyone can truly understand what life is like for people with disabilities until they understand both the utter banality of most aspects of our lives (Look! Andrea went grocery shopping today! She bought soy milk! Being eco-conscious, she put this carton in her backpack instead of a disposable bag! How thrilling! And, gosh, being deaf had exactly zero to do with any of this!) and also the way that the reactions of others can turn what SHOULD be a banal interaction into something that goes completely kablooey (eg, most hearing people are mostly okay interacting with me as a deaf person, but some are so convinced they cannot communicate with a deaf person they shut down and then I can't communicate with them because they are too afraid to even try!) The stuff like PT, OT, speech therapy, whatever... sure, those are there too, or at least they're there for children (not always for adults). And I guess it can be worthwhile in helping people understand that, yes, Andrea has good speech but that's partly because she spent 15 years in speech therapy as a child. But there can be a risk in over-focusing on them to the point where viewers get the sense that this is all we do. Or that it is somehow sad that we had/have to do these things. Or that we are "brave" (another word to be very very careful of) for having done these things.

Read some of the other BADD posts to get a broad sampling of what disablism can look like in every day life. You can also find reams of chatter about all aspects of life as disabled adults, and some older teens (mostly from a UK perspective) over at the BBC Ouch chat board (http://www.bbc.co.uk/dna/mbouch/F2322273)
(just be aware that UK "PC language" differs from US "PC language" when it comes to disability)

It's good that you recognize the need to talk with adults and teenagers with disabilities. We often have a different perspective on things than parents do because, however much our parents love us, they just don't live inside our skin or inside our lives.

I would urge you to not only consult closely with the teen and adult disability communities but also to consider HIRING adults with disabilities into your team of staff, directors, writers, whatever positions you might have open. Many of the choices you make are tiny, tiny, micro-choices that seem so trivial you might not think to ask the right questions until it is too late to do anything. The kind of micro-choices that you don't even make yourself because you've delegated them to other people who you just trust to do them right. You need people who are right on the front lines, personal witnesses to those micro-choices--or, better, personal participants in actually making and implementing those micro-choices--to help you catch little issues before they become big issues. Because sometimes those "micro-choices" have a more significant impact on the kind of message your show sends than you might realize.

Also, maybe consider incorporating one family in which both the children and also one or both parents have disabilities. Not necessarily even the same disabilities. (It does happen sometimes that the parents have one disability and the child something completely unrelated. For example, I know there are some deaf parents who just happen to have hearing, autistic children.) They might bring a whole new set of interesting perspectives. But parents who do share the same disability as their kids could have some really fascinating perspectives to share also. For example they are often able to advise their kids in coping skills drawn from their own first-hand experiences and might be teaching things that non-disabled parents might not even realize they need to teach.