Tuesday, October 27, 2009

The Invisible Disabilities: Are They Treated Fairly?

Or, Why I Hate The Beeachay At Crappy Lab Corp
________________________________________________________________________________

"You can just wait like everyone else" a sour faced receptionist shot at me. "You mothers of Autistic kids always come in here expecting special treatment when your children are just as capable of waiting in line as any other child is."

No. She. Didn't. She didn't just go there.

These words were spoken to me 5 years ago but still feel like a fresh wound every time I go back to get CB's blood drawn. This is the story, told as if it were yesterday because sometimes that's how it feels...

It's 7:05 am at a Lab Corp facility where I need to get CB's blood drawn to check her med levels. The tiny, sterile waiting area is wall to wall with people, spilling out into the halls. The wait is likely close to an hour. CB, very severe on the autistic spectrum, does not handle crowds, cramped spaces, uncertainty, waiting, and other general realities of life very well. As she is utterly non-verbal, she has no other way to communicate her discomfort other than behavioral meltdown. I'm completely in a panic and feel the hundred eyes in the waiting room on me and my "different" child. People shift nervously in their seats as my daughter jumps, squeals, moans, drools, hits, and otherwise does not act like a typical citizen in a typical waiting room on a typical day. I feel like I have to apologize for being out in public. For corrupting everyone's "normal" lives with the abnormality of our presence.

When I realize the length of the wait, the conditions of the waiting area, and CB's difficulty with such sensory overload, I start to deliberate whether or not I should ask the staff people if any accommodations can be made for my daughter. Flushed, feeling conspicuous, fragile, and anxious I go to the front desk seeking assistance, empathy, and yes, I suppose a little special treatment. What I get is the quote from "Sally" with which I opened this post. "You can just wait like everyone else. You mothers of Autistic kids always come in here expecting special treatment when your children are just as capable of waiting in line as any other child is."

She can wait like any other child? No, you compassionless, ignorant shrew, that is the problem! She CANNOT wait like any other child. If she COULD I wouldn't be standing here in front of you humbling myself asking you for assistance! She is NOT any other child. She is not in control of herself. Her AUTISM is in control. Her brain is structurally different. She has the diagnoses of: chronic static encephalopathy, generalized seizure disorder, severe to profound mental retardation, and Autistic Disorder. She is disabled. She looks relatively "normal," but she is disabled. She cannot dress herself, bathe herself, brush her own teeth, open a container, buckle or unbuckle her seatbelt, manage her menses, cut up her food, talk... I mean, she eats her own sh*t for God's sake! DIS. AB. LED. She cannot "wait" in this overcrowded, fluorescently lit waiting room without making everyone's life a living hell. She is not spoiled. She is not poorly disciplined. She has Autism and cognitive impairments. Ever hear of it?

The audacity of me to request a little special attention! I am so sorry. How dare I cash in on a no-wait pass at Disney or a little respite care through Division of Developmental Disabilities. What a heinous, self-serving mother I am! And, to expect a little help at a facility that provides patient care? I am so used to getting my ass kissed because of my child's special needs that it certainly makes living with Autism so rewarding! Boy I'm making out like a bandit, alright. I get to cut in line at Lab Corp, which certainly counterbalances the fact that I also get to clean up her almost daily fecal smears, worry about her running into traffic, spend about a billion dollars to take care of her the rest of her life, and manage every aspect of her self care. I get to stress about the severe seizure disorder that has landed her in the hospital numerous times starting at 4 months of age. A seizure disorder that could realistically be the death of her. Please forgive me for my selfish request. I am not worthy. She is not worthy. She's only autistic after all. She'll manage. We'll sit and wait like everyone else, because after all, we ARE like everyone else, aren't we?!?

This whole thing made me wonder if this type of attitude was reserved for the disabilities that are less physical and perhaps less easily understood? The Invisible Disabilities. Had CB been in a wheelchair, hooked up on monitors, missing a limb or blind, would I have encountered the same resistance? I'm not sure. Maybe this particular woman was such a Beeeachay that I would have. But it seems to me, anecdotally at least, that when a child has ADHD, Conduct Disorder, Intermittent Explosive Disorder, Autistic Spectrum Disorder (especially "high functioning), Tourette's, or a psychiatric diagnosis sometimes people interpret the behavior as "within that child's (or parent's) control." At times, the less disabled you LOOK, the less accommodations and understanding you are given. At TIMES. Certainly, this is the exception. But when it DOES happen, it shatters you.

Clearly, in this case, the extent of CB's disabilites were "invisible" to Sally and therefore my daughter was deemed undeserving of any accommodations. If everyone else has to wait an hour, CB can wait an hour too. Now, I'm certainly not against CB being treated "like everyone else." In fact, that's my lifelong goal. BUT, I guess there is a caveat. Give her the same opportunites and value her quality of life the same as "everyone else." Treat her with the respect and dignity "everyone else" deserves. But, when she needs accommodations, give her a break! The kid didn't ask to be born this way. Can you throw us a bone?

So, what's next Miss Sally? Will a person confined to a wheelchair have the audacity to ask for a ramp? Will a blind person have the presumption to ask for signs in Braille or permission to bring their seeing eye dog into the waiting room? Last time I checked, accommodating disabilities was the law. Last time I checked, Autism and cognitive impairments were disabilities.

Who knew ignorance could be such a lethal weapon? Wielded like a dagger, it aims for the heart. Slashing at a wound as invisible as Autism itself. A wound that never stops hemorrhaging.

* This was originally posted on Autism Sucks

26 comments:

Nancy Campbell said...

Unbelievable. Sally needs to find a new job, and you need to continue doing what you do, because it is powerful stuff.

Arielle Lee Bair said...

Sally should have been reported for that comment. It was rude. Obnoxious. And uncalled for. Even if I had been waiting in line there for 3 hours and she ALLOWED you to be treated before me and had uttered those words, I would have been appalled and disgusted with her. I do think you have a point about invisible disabilities being treated unfairly in many respects. I think it's amazing that you can write about this stuff so passionately and intelligently without it eating you alive the way it could. When I read this post, I wanted to hug you.

kys said...

I wanted to stand up and cheer for you when I read this. I hate the attitude people have about kids with autism.

Why can't we help each other out? Aren't we supposed to love fellow human beings and treat them with kindness and respect?

PS One of the pediatric dentists in my town always give the special needs kiddos the time slot right before lunch. The come in the back door and go right in. Bypassing the whole waiting room experience. Isn't that great?

fullsoulahead.com said...

That woman should be reported. We have a lab here that does bend over backwards, no, does back flips for our kids! The nurses bring CD walkmans, and put on goofy kid music and make sure the Emla cream has been on, and dance and shake their booties to distract our kids during blood draws.

There are good people out there. Keep searching. They are there.

Queenbuv3 said...

Great post! My son looks "normal" too and people expect a "normal" kid until he starts flapping or moving his hands around in a wierd way, repeats movie quotes complete with sound affects over and over, toe walks, fidgets with his homemade necklace, etc. I can relate to what you are saying about feeling like Autism can be an invisible disability until our kids do something not "normal" and people don't understand that they are acting that way because they have a disability not because they are brats and we are horrible parents!

Stimey said...

Phenomenal post. Exactly. Just because a disability is not obvious, it is still there.

EquiisSavant said...

I get treated the same way in the court systems and state Bars/bar examiners as an adult with autism -- I really can't help needing Autism accommodations or acting autistic. It is how my brain is wired. They don't understand it. They think treating everyone the same means they are not discriminating, when people with Autism can't cope with that and need different special Autism treatment and accommodations.

Cinda said...

I have been in the field of special ed and disabilities forever it seems (and was raised by a mom with M.S. so had that whole thing going on as a child). Yet I am continually shocked and saddened by not only the lack of adherence to the the law but simple humanity and compassion. This is a long story I will try to tell quickly: I was teaching a class of grad students (psychology mind you!) and announced that we would have a guest speaker the next class session that would address bipolar disorder. A table of four students were discussing this as they spent time on another project. One student said, "OMG, biplor is like the nastiest thing ever. I had this room-mate (yadayadayada) and she was absolutely freaking crazy. No one could stand her....etc, etc." I did not say a thing. The next session the guest speaker (who happened to be my daughter) and myself presented on bipolar and read parts of our book to the class. Yes, the part where my daughter was in a psych ward, having ECT, completely suicidal. Now she stands in front of this class of students close to her age and shares her story. The student with the less than compassionate opinion (former school psych??) looked absolutely stricken. She stayed after class until everyone was gone and came up to tell me she was so sorry. I said, "Remember the elevator." You never know who will be in the elevator with you when you are talking with no compassion or care for others. A mom? A friend of your boyfriend? A future employer? Or in Sally's case, an attorney or the H.R. guy from the clinic. Thanks for your story!! Sorry this is more than a comment!

Tanya @ TeenAutism said...

So well said. I swear, this needs to be published in Newsweek's My Turn column.

Claire said...

A friend of mine who teaches at a high school once told me: "If your disabilities are obvious, the kids and everyone are fine...but when they aren't...those kids really suffer." How sad.

Alicia (aka Dr. Mom) said...

@ Equissavant, thanks for sharing your experience with this as well! I am saddened that this happens to more than just me and my family.
@ Cinda - your story was so powerful! im happy you shared it here. It is a really powerful reminder to 1. have compassion regardless of who is listening but 2. to really watch how you say things and what you say. I love the elevator analogy :)

michelle said...

Unbelievable. Astounding. We always provide a room for a child with a disability, or a parent with a disability. Why? BECAUSE IT'S THE RIGHT THING TO DO. Period.

Excellent post.

Cal said...

Having been in the same position with our son so many times when he was young, we were thrilled when we found an in-network lab location with a manager that was more understanding. After a couple of episodes that were similar to yours, though without the more severe rudeness, she gave us her card and for the next couple of years, personally scheduled us for blood draws at times she knew would be quiet (which helped reduce the behavior) and fast (which made our son's efforts at better behavior more possible). She also identified a phlebotomist on her staff who turned out to be great with him. He responded pretty well to being rewarded with diner food (something he absolutely loved) after each draw. 13 years later my advice is keep at it and keep working for CB. Day to day it seem like progress is glacial - and there are too many people who don't get it. But your efforts will pay off over time. I know you will meet some folks who give you hope. It's important to keep your eyes and ears open for them.

Corrie Howe said...

Hopefully people will become more aware of autism through organizations and campaigns. I agree invisible disabilities are hard to handle. Thanks for the post.

I think I would've handled this one of two ways. (Actually, I know in the past I would've handled it one of these ways. Now, I'm a newer gentler model...hahaah.)

Once, when I was traveling with my oldest son as a toddler, we were booked in separate seats for a flight. I asked to put together, the reservations person said to talk to the steward at the gate. At the gate the steward told me it wasn't their responsibility to put us together. However, I was more than welcomed to ask other passengers to switch places with me. I'm a shy person by nature, so I just said to the steward. "That's okay. I could use a break from my chatty hyperactive toddler. I'll let some poor stranger handle him." Then I went and sat down in the waiting area. The steward came back and ushered us to first class.

My other bull in the china shop way would be to demand to speak to Sally's supervisor, and then their supervisor until someone took CB's blood. I've found being a pain in the butt does get results. Not friends, but results.

erika said...

Such an excellent post! And you are so right about invisible disabilities. As for Sally, maybe a job that doesn't require much empathy or well-honed interpersonal skills would be a better fit.

Alicia (aka Dr. Mom) said...

I agree erika... i mean, if you arent a caring person, should you be in the patient care field? ;)

Stephanie said...

Wonderful post!

sheree said...

I hope you do a part II to this story and write that you slapped that woman across the face and got her fired. Wow. I am so sorry that happened.

:(

rhemashope said...

So sorry that happened. This is an incredible post that stirred a ton of emotions b/c i was so there with you in that waiting room. And then, (hope this doesn't sound weird) your post brought tears to me eyes - just to know that I'm not the only one who deals with cleaning fecal smears almost daily. Thank you.

Lisa Jmaes said...

my son aged 20 who has Asperger syndrome said "I don't get it about 'hidden' disabilities.....if I had an internal injury I'd be given treatment!"......I run a support group called 'Care and Share in my local area, Wirral UK, and AS kids and adults get a raw deal from health, education and social services. Our misson statement is "Together we can prevent social isolation and promote understanding of Asperger Syndrome" http://twitter.com/CareandShare09
Lisa James

Alicia (aka Dr. Mom) said...

HA! Sheree - that would be an AWESOME part II. Ill go back there and write LabCorp: the Sequel

Beth L. Gainer said...

Sally needs a good beech-slapping. Unfortunately, she's a lazy, cruel, mean person. As hard as it was to deal with her (you demonstrated great courage), it would totally suck to be her.

Mama Deb said...

This post left me with that icky feeling in my stomach I am getting more and more these days. I know that this response is bound to be thrown at us someday...likely soon...as my son gets bigger and seems to slip farther and farther away from us.
...sigh...

Cinda said...

I shared this story with my class of grad students. First I showed them the beautiful picture of your daughter and asked them to develop a "profile" for her. It, of course, did not include all the things that she needs help with or the areas that are most difficult for her because she doesn't look "disabled". Then they read about your experience and, of course, were completed outraged. What could they do as professionals and community members? They came up with some good thoughts. A few: If they were sitting in that waiting room, they would speak up, support you, ask how they could help and be a voice for your daughter by talking to not only Sally but the manager. They said they will no longer sit quietly when someone is put into this position. They also talked about how they should help support parents who, unlike you, are not aware of their rights or have the skills to advocate for their children by either helping them find advocates or connecting them with community supports. They also want to do more awareness and advocacy work in their own communities. My students will all be special ed teachers, school psychs, school counselors and some principals. So they will have some impact! Thank you again for sharing this.

Becca said...

People like Sally are just as shitty with those of us whose impairments are very, very obvious. She's the nurse that walked away muttering "I don't have time for this" as, immediately post-op, I eyepointed out letter by letter that my incision was hurting me. She's the social worker that 'can't understand' why 15 minutes to prepare a meal, feed it, and wash up isn't enough - because she can eat her dinner in 15 minutes. She's the bus driver that accelerates past when he sees a wheelchair user waiting at the stop, the doctor that complained about my attitude of 'entitlement' for asking her please to let me finish spelling my message before speaking.

In summary, some people are really shit.

Alicia (Dr. Mom) said...

@Becca, it makes me so sad to know you were treated in this way at times you were most vulnerable BY people who are SUPPOSED to be in the helping profession. I know they are an exception to the "norm" but it always shocks to learn these people are out there hurting others. Thanks for your comment and your insights. xoxo

Related Posts with Thumbnails