Beach front boardwalk ramp, South Florida.

Why We Should Care About Disability Accessibility Before It Affects Us

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It’s funny how a changed perspective can suddenly shift what we care about.

Before we went to Florida with my parents, I described what the condo was like to my daughter Namine, who was born with multiple physical disabilities. I told her about the pool area, and about the boardwalk down to the beach. I told her what I remembered (and after so many years of visiting every July, I remember it so clearly) — steps leading up to the boardwalk, and steps from the boardwalk to the beach.

My parents had told me they’d rented a beach wheelchair, so Namine wouldn’t need to be carried everywhere. What they hadn’t told me — which I discovered to my delight — was that the stairs on either side of the boardwalk had been replaced with ramps.

Although the ramps’ existence was a happy thing for us, the reason for them appearing was not. Something had happened to someone in the owners’ family, and now that person uses a wheelchair. Out of this circumstance came the need for accessibility, which would have otherwise been (as it had always been in the past) ignored.

I have often heard it said, “There is no longer any excuse for a business to not accommodate accessibility.” But the unfortunate truth is that we humans tend to ignore what does not pertain to us. Even with laws meant to enforce it, many owners do nothing to improve the accessibility of their property.

The need for wheelchair accessibility used to not pertain to the owners of the condo. Now it does, and they changed it accordingly. But the fact of the matter is, under normal circumstances, they would not have done so.

We need more accessibility — and not just for wheelchair users, but for other disabilities as well. But before that can happen, we need more awareness and accountability. Because we’ve obviously proven as a society that we aren’t going to take care of it, until it affects us.

This story was originally posted on eichefam.net.

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What I Learned About Inclusion From My Assistant Principal With Tourette Syndrome

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As I passed through the entrance of the school and walked down the hallway of the office of my next potential employer, I heard Mr. Brad Cohen’s vocal tics off in the distance. My special education supervisor had mentioned that the assistant principal had Tourette syndrome, and while I have had brushes with people who have had the syndrome, I had never worked with someone so closely.

I took a seat in front of the principal and the assistant principal of Addison Elementary School and the interview commenced. Throughout the entire meeting, Mr. Cohen displayed a wide range of motor and vocal tics.  Despite his unusual mannerisms, they didn’t impact the dialogue or the demeanor of either the principal or Mr. Cohen himself. It was easy for me to take my cues from them and proceed with a “business as usual” attitude, and by the end of the talk, I didn’t give it a second thought. What did cross my mind was how fantastic it was to have the opportunity to work at a school where inclusion was not only something that was talked about, but was lived (even in the front office). Spoiler alert: I got the job!

Brad Cohen will be the first one to admit to you that his tics can be distracting. He has been making them since he was 10 years old, and was often ridiculed by his teachers and classmates for not being able to control them. Fortunately, only strengthened his resolve, and he committed to becoming a new kind of educator, entering into the very profession that let him down in the early stages of his Tourette syndrome. After 24 elementary schools rejected his application for a teaching position, he secured a job at Mountain View Elementary School in Cobb County, Georgia. He wrote a book about his story, “Front of the Class: How Tourette Syndrome Made Me the Teacher I Never Had” and it won the Independent Publisher Book Award for Best Education Book for 2005. The book was later made into a Hallmark Hall of Fame TV movie, “Front of the Class.”

Throughout his life, Brad was told that the uncontrollable noises and movements he made would be too distracting for his co-workers, his students, and perhaps even his loved ones. Not unlike people with vocal or motor stims (the repetition of movements or sounds typically by people with autism), he was written off and battled against the curse of low expectations. As I began my first few weeks at Addison Elementary, I was struck by the parallels between Brad’s Tourette syndrome and the noises and movements of autistic students I have worked with in the past and the present.

One of the biggest “a-ha moments” I had this year was when I was talking to my wife about working at a school where Mr. Cohen’s Tourette syndrome was not hidden, but something that was talked about from the very first day. During the first week of school, Mr. Cohen explains to the students why he makes certain noises and movements and tells them it is OK to ask him questions about it. In addition, his vocal and motor tics are seen and heard every morning when he does the announcements on the live simulcast throughout the school. They are evident during school assemblies, ceremonies, and staff meetings when everyone is expected to be quiet. They are unmistakable as he makes his way around the school visiting kids and teachers in their classrooms.

Seeing how the students and staff have adapted to Mr. Cohen made me think about how a similar familiarity happens when students with disabilities are included in general education. It may be weird at first but by the end of the year, it is just “business as usual.” How many times have students been removed from general education classrooms and put in self-contained classrooms because they are thought to be too distracting? It usually only has to be the threat of disturbance and not even the evidence of any that will cause the removal of a student. Furthermore, what does this tell us about what we think of self-contained classrooms as effective places to learn when we populate them with the most “distracting” students? Don’t those students deserve a distraction free environment for learning as well?

The students and staff at Addison Elementary presume competence when we are confronted with who Mr. Cohen is. We give him the benefit of the doubt and we take our cues from the people who have known him the longest. He has demystified Tourette syndrome for us. What if we could do the same thing for autism, or any other disability for that matter?

As I read some of the explanations of how tics are involuntary, they reminded me of how people with autism describe stimming.

“Tics are involuntary. They are in no way willful. All tics both motor and vocal are the result of a chemical imbalance in the brain. Persons with Parkinson’s disease have slowed down movements because of a similar chemical imbalance. We would never accuse a person with Parkinson’s of being voluntarily disruptive and we certainly would not punish them for these uncontrollable movements. Tourette syndrome is no different. People with TS are sometimes able to suppress some symptoms, but frequently this requires extreme energy and attention and it only can be done for short periods of time. Also, typically when a person is expending so much energy into suppressing, they are unable to concentrate on anything else. Tics when suppressed will almost always worsen in the long run.” – via Tourette Association of America

What I find most interesting is the insight that trying to suppress tics not only increases their likelihood but does so at great emotional and psychological expense. This is analogous to how autistic individuals describe “passing,” or pretending not to be autistic.

“If you are the parent or guardian of a stimmy child, and your goal is to stop your child from stimming—to teach her to stop flapping her hands, or repeating her cat’s meows, or chewing on her shirt sleeves in the grocery store—know that you are aiming for an impossible standard.

Stimming is a valuable tool for autistics to self-regulate, self-sooth, and gain familiarity and control over their bodies and environments.

…if you keep your child from stimming, the stim will always come up in another (usually worse) way.

I find this mentality most common among what I call “anti-autism” parents or specialists. These are the people that say, “I love my child, but I hate my child’s autism.” They are usually well meaning (if misguided) parents who only want to spare their child a difficult life.

But autism is not like depression, anorexia nervosa, or PTSD. Autism is not the demon we should be fighting. The true demons are disability, anxiety, and misery.” – Kirsten Lindsmith

We define, as a society, what we believe is acceptable or unacceptable behavior.  It is based on the criteria that we claim any impact (positive or negative) on the environment, whether that is a classroom or a movie theater. We also have the opportunity to educate the people around us about the difference and diversity of human beings. Teaching at a place where Mr. Cohen’s Tourette syndrome is not only tolerated, but accepted has shown me that it is possible for inclusion to become a mindset for a school. How far-fetched would it be for us to do the same thing for students (or even adults) on the autism spectrum?

An attitude of inclusion needs to start at the top, with our administrators and district leaders. How fortunate am I to live that out on a day to day basis.

Read more at Think Inclusive.

Photo Credit: Flickr/frontoftheclass (used with permission)

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When a Job Application Asks If I Have a Disability

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As my current job search wears on, I am faced with a never-ending array of job applications and personality tests. I hope in vain that they don’t get lost in cyberspace and will get picked up by an actual human being who will take the time to read them.

I type and type, pecking at the keyboard to enter the same information I put down the last 30-plus times on yet another form. Then come the survey questions:

What is your sex?

Are you 18 or older?

What is your race/ethnicity?

Are you a veteran?

And then I come to the next one, and suddenly it feels like I’m face to face with Wayne Brady on “Let’s Make A Deal,” my destiny determined by one answer.

The Disability Status Question. It’s worded in many ways, or sometimes it’s skipped over altogether. But that question could very well be the deal breaker between a callback for an interview, or another rejection letter.

There are many outcomes that can come out of how I answer. This particular app has a disclosure saying they won’t use it against you, but given the prevalence of disability discrimination in employment, I don’t want to take the chance.

If I answered “Yes, I have a disability,” it could very well lead to an instant throw-away of my application, as I have seen many times in the past. Disability stigma is very fresh in people’s minds. The Americans With Disabilities Act is only 26 years old. Despite a strong movement for basic civil rights and opportunities, plenty of employers are still afraid of the unknown. Many are worried about their image of the company or believe people with disabilities are a liability, a risk nobody wants to take on. Can the legally blind girl count money? What about that guy in the wheelchair, can he operate a box cutter safely? And how will customers react to a deaf barista?

These fears and more limit opportunities for disabled people to grow beyond what society deems acceptable employment. Some employers may use us as a tax write-off, where others might see hiring as a way to earn kudo points with the community. Those are the wrong reasons to hire somebody with a disability. Whatever happened to going by abilities first?

If I answer “No, I do not have a disability” – I am fortunate enough to be able to hide my disability to a point. Aside from my thick glasses, you can’t really tell. But when you factor in fluorescent lighting or extremely small print, that’s when it becomes apparent that I might need a little help. I can only hide it for so long until someone will notice. Hiding my disability would just lead to more problems, and could potentially lead to termination if my needs aren’t disclosed.

If I say “I prefer not to answer,” the same scenario above will play out the same way. To a potential interviewer or hiring manager, seeing this answer could raise red flags as to whether or not the candidate is truthful. This could cause them to throw the whole application out.

Potential employers have a fear of what they don’t know, and in some ways, I can’t say I blame them. You don’t know what a person is capable of until you see them in action — and the only way to see someone in action is to hire them. What company is going to invest in training an employee for something they think they might not be able to do?

But on the other hand, shouldn’t you be worried about the able-bodied candidates as well? If you think about it hard enough, everybody is a liability upon hiring. I can’t tell you how many trainees in my previous job were transferred or sent home because they couldn’t learn the computer systems — not because they were disabled, they weren’t — but because they simply weren’t tech-savvy.

These particular set of doors in this game called life are ones nobody should have to fear, employer or potential employee included.

You would think 26 years would have been enough to see adequate progress, but I believe more needs to be done so everyone can have an opportunity to work without fear of disclosing a disability.

Which door will you choose? How would you answer this question? And what do you believe the result might be?

There’s only one way to find out.

Follow this journey on Legally Blind Bagged.

 

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A Letter to the Teacher of a Sibling of a Child With Special Needs

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As another school year begins, I know you are busy preparing your classroom, mapping out lessons, attending faculty meetings and anticipating the new faces that will enter your classroom and your life. It is a busy time — a little overwhelming and so very exciting — for you, for the kids, and for parents like me.

Ever since my youngest daughter entered day care, I have always composed a letter to her teacher. It is detailed and has probably garnered its fair share of eye rolls and sighs. It explains, in no particular order, how and when to put on and take off my daughter’s SMOs, how to handle her meltdowns from sensory overload, how her hypotonia often makes tasks like writing her name and keeping up with the other students in the hallway a struggle, how when presented with something she knows will be a challenge for her muscles, she will sometimes shutdown.

I feel like I must write that letter. Every. Single. Year. That letter is easy to write. I have most of the answers. I know what the end goal is. I understand the journey we are on. I write that letter to make the teacher’s life a little bit easier. To make my daughter’s day at school a little bit brighter. And to make my time away from her a little bit more manageable.

But, there is one letter I have never written until today, and it is this letter to you. A letter to my oldest daughter’s teacher.

In a few short days, my daughter, L, will be stepping into your classroom for the first time, and I know upon meeting her, you will notice the obvious: She truly loves learning. This summer, she spent many days  at our local library devouring book after book. “I want to make sure I check out at least one fiction and non-fiction book each time to keep my reading balanced,” she told me one day. And she did. When she wasn’t reading, she was participating in a Young Author’s Club. She penned an R.L. Stein-inspired short story infused with flashbacks and allusions and cliffhangers and dialogue. She revised the piece five times. She’s a perfectionist and a hard worker.

You will easily see she has a big heart and is constantly going out of her way to take care of the people around her, to make sure everyone is included, to lift up people who are feeling down. She will eagerly volunteer to help you pass out papers, and she will happily help her classmates without being asked (but with your permission because she is also a big rule follower).

Within a week or two, you will probably pick up on the fact that she is not a fan of math, but she can do the work. That she approaches difficult tasks with a positive, “can-do” attitude. That she loves music class and drawing and science experiments, and that when given the choice to dance in P.E. class or walk laps, she will always pick to walk laps.

You will recognize that she makes friends easily. She always brings her lunch and she still thinks boys may possibly have cooties. (I am OK with this. Her father and I have decided she can date when she is married and 35.)

But I am not worried about what you may see on this journey. I want you to know what you may not always see.

As you have already read, her younger sister has special needs. In the perfect world, that would mean absolutely nothing. It would mean L hasn’t had to frequent the offices of various specialists: genetics, neuro, caridology, to name a few. It would mean she has never waited patiently for two hours a week while her sister goes to occupational and physical therapy. It would mean she has never sat in the car with me, following an ambulance as it rushed her sister to the PICU for a lengthy stay. It would mean she has never seen her sister made fun of or ignored because she was “different.”

Unfortunately, ours is not a perfect world. L has experienced all of these things and more. While it pains me to write that, I also know these experiences have shaped her into the beautiful soul she is.

She is a patient and considerate individual. She knows the power of an “inchstone.” She has watched her sister slowly learn to crawl and walk and run. She holds her sister’s hand, mindful of slowing her pace, as they walk together so her sister can keep up.

She is a compassionate and accepting individual. She has witnessed firsthand the hurt that comes from being left out and how good it feels to bring others in. She believes beauty exists in our differences.

She is a nurturing and strong individual because she often feels it is her responsibility to protect her sister from the cruelties of the world, to help her, to keep her safe, to stand up for her.

Like many other siblings of children with special needs, L knows more about sacrifice than I wish she did, but she also knows about the power of unconditional love.

I want you to know sometimes she worries about her sister — that she might get hurt and never be able to walk again. Some nights, she cries, fearful that the next time her sister gets sick, there will be another hospital stay. While at school, she is afraid her sister will go back to the hospital and never come home again. At bedtime, she prays for her sister’s muscles to grow stronger and to stay strong.

And I do my best to reassure her. I hold her. I wipe away her tears. I listen. I pray too. But I am not perfect. I am still learning how to parent two extremely different children — one who constantly needs me and one who deserves more of me.

I don’t have a list of instructions with this letter because I don’t have any answers. I am navigating murky waters on an uncharted journey. And I know you have many students, all with diverse needs that you are expected to meet every day. And I know you don’t get to pick which students you want and what homes they come from and what experiences they have lived through. So, I write this letter to simply say thank you. I know this is a journey you didn’t necessarily sign up for, but I already feel better knowing you are traveling these waters with me.

Image via Thinkstock.

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What Gets Left Out When We Talk About 'Quality of Life'

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“Let’s talk about your quality of life.”

I think this one of the most widely-known quotes within the disabled community. I can’t count the amount of times on all of my fingers and toes how often I’ve heard this phrase, and for some reason, much to my surprise, the quote “Let’s talk about your quality of life” knows no limit of age.

I think the first time I heard a doctor say, “Let’s talk about your quality of life” to me I was about 10 years old, and I was curious if she ever saw me one day walking without my walker, a real dream and goal of mine at that age. I swear if she had a PowerPoint presentation prepared at that moment she would have loaded it up, complete with a stick for pointing at all of the pros and cons of walking independently as she listed them off to me.

I didn’t know how many more times I would hear her say this over the next 11 years. In fact, it seems like every time I ran into a problem or purposed an idea, it couldn’t be without discussing my “quality of life.” And I have to tell you, my life is pretty good.

Doctors are not always 100 percent right. I chose to walk independently that day. I did so for roughly six years. At about 17, I was diagnosed with chronic pain. I had many mixed emotions, wondering if I had done the right thing that day — if I had continued using the walker, I may not have this pain right now.

But somehow I think that doctors, society and even patients get lost in all of the language. We start focusing on “Well, if I walk a little more today, I’ll have more pain tomorrow.” Yes, that may be true, but what did you gain in the steps that you walked? Was it freedom? A sense of “normalcy?” Independence? Hope?

Because I think all of these things are so important and factor so high on the “quality of life” scale, and yet they are so often left out. Sure, now I have a walker and a power chair when I need it, but overall I walk more often than I use my power chair or walker combined.

You don’t know how long you’ll be where you are with what you have — no one does.

For me, the feelings of independence, hope, etc. were so much more important. They meant so much more to me than anything that could have, might have, or in fact, did go “wrong” by me choosing to walk and walk unaided. I am so happy and proud that I can do that and continue to do so. I know not everyone can. I have always felt like “quality of life” should not be about pain management or prevention. I completely understand why it is so important, and believe me, it is. But I think what makes someone happy triumphs. I am over the moon that for six years I walked pain-free on my own. I am so proud that I will gladly sit with the consequences.

Tell me about the phrase “quality of life” and you in the comments!

This blog was originally published on Cerebral Palsy News Today.

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What Life in a Special Needs Family Looks Like

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There are a lot of misconceptions about what life in a special needs family looks like. Often people tend to overemphasize the difficult parts or downplay the physical and emotional toll that consistent daily stresses can cause. 

We happen to have two children with “significant” special needs, and here’s what life looks like for us. 

It looks like a sister and brother racing up and down hills on a walk. 

It looks like people “helping” to make pot stickers for dinner. 

Jessica Graham’s family

It looks like kids being kids, and my husband and I being parents. 

Jessica Graham's family

My family doesn’t have a “normal” day, but I don’t know any family that does. For us, “typical” includes special equipment (like my daughter’s motorized wheelchair and dressing tree or my youngest child’s splint), frequent medical appointments and always trying to adapt and improve how we do things.

Some days being a parent is one the hardest things I’ve ever done; some days it’s the greatest gift I’ve ever been given. Usually, it’s the same day. 

One of my biggest concerns about becoming a mom to children with “extras” was how it would affect our typically developing eldest child (who had a more correctable need). Early on, he helped lay those fears to rest. During the adoption process for our daughter, we showed our son pictures and video of his sister with a limb difference, trying to explain her differences the best we could. 

Some time later, our son told us that our daughter wouldn’t be able to play golf. We naively assumed he was telling us this because of her limbs and assured him that she would be able to golf, just differently. He insisted repeatedly that she wouldn’t be able to. Finally, we asked him why he felt that way. “Because she’s a girl,” he said matter-of-factly. It was an answer that only our beautiful 3-year-old boy could deliver.

Well, that girl has shown him what’s she made of time and time again. And that little boy has shown us what a wonderful big brother he is. Last week was back-to-school week for us, and now that they’re in first and second grade respectively, they’re on the same playground this year. They spent the first two days of recess playing with each other (football, by the way). My rough-and-tumble guy’s guy chose to forgo playing sports with his sweaty, arm pit noise-making friends in lieu of playing with his little sister. And it’s not like he was doing her any favors. They each felt lucky that their sibling had chosen them instead of their other friends. Just hand those kids their diplomas already. 

Life, of course, is not always like that. We like to joke that there’s often a lot of crying at our house and that sometimes it’s the kids. (Naturally, our youngest who is on the school’s transitional kindergarten/kindergarten playground felt left out when he heard about his sister and brother’s joint playtime.) 

There is no average day in the life of a special needs family. Each need is unique; just as each family is unique. A child with developmental delays and a child with physical or medical differences each experiences life differently, as do their families. The things that become my normal will never become another family’s normal and vice versa. 

The first time my husband and I ever went to a special needs support group, everyone went around the room and listed their children’s needs. Each time a family explained their situation, I thought, “Oh my goodness, that sounds so hard.” In talking to some other families later, it turns out they were thinking the exact same thing about us!

If you’re a special needs parent who feels discouraged and overwhelmed, please know that I’ve been there and that this perspective has been years in the making. 

If you’re a prospective adoptive parent who is considering special needs and are scared and afraid, please know that I’ve been there. 

To each of you, I would say this: Seek out other families who have been where you are and who are where you want to be. Listen to their stories. Any family that only tells you the hard part is only telling you half the story. Any family that is only telling you the happy part is only telling you half the story. There are no good days or bad days in parenting — there are only days, each one more fabulous and maddening than the last. 

A version of this post was originally published on In Pursuit of Loud

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