Disability Stories and The Media

Yesterday, I heard on the radio two short pieces about young adults with disabilities.

The first, "Student with Cerebral Palsy to Graduate,” was on NPR's Morning Edition. A guest professor who had taught a class at the University of Delaware shared his experience of meeting a student and his mother.

After listening to this story, I felt compelled to write to NPR. I wrote,

“I am 21 years old and, like Sumner Spence, have cerebral palsy. I am so tired of the media’s portrayal of persons with disabilities and their families as either pitiful or inspirational. Both pity and inspiration are two sides of the same coin – the stereotype that people with disabilities are inferior beings; so either feel sorry for us or be inspired when we don’t match imposed boundaries and labels.

Why should a university professor be surprised that a university student would offer “sharp observations” and ask “smart questions?” Because of a wheelchair or weak hands? Not only do students with disabilities have experiences common to all students, we also have a wealth of perspectives shaped by living with our disabilities – perspectives that those who are able-bodied cannot possibly have, perspectives that can add to the diversity of intellectual discussions.”

This story was by no means as bad as those "feel good" sports stories where the kid with a disability is allowed to score a touchdown or make a basket. But I wrote the letter because people with disabilities cannot be respected as full members of humanity until society drops the inspiration/pity stereotype.

Last night, I heard the piece, "The Dog That Changed Her Owner's Life," on BBC Outlook. Hannah Baker, a 21-year-old woman who at one time could barely leave her house because of a seizure disorder, told how her life was changed by a service dog. I really liked how this interview was conducted, because Hannah shared her life experiences in her own words and the interviewer asked deep, thoughtful questions, seeking to understand the whole picture. Most importantly, there were no underlying messages of inferiority or pity or inspiration given to the listener. It was a fascinating story and the young woman’s disability was one part of it.

Disability Blog Carnival #15!

Kathryn from Ryn Tales has put together a rich assortment of posts that cover family and many other topics. I found some new blogs at this carnival, which is very exciting!

Reflections on Self-Love, Self-Worth, and Family

The 15th Disability Blog Carnival will be on the theme of family and disability. Able-bodied or disabled, all children learn their value from the people with whom they spend time.

From listening to the childhood reflections of others and from my own childhood experiences, I see that the young child with a disability is like a sponge, absorbing and internalizing the feelings and actions of family and caregivers. I've put together a composite of some of these reflections.

If I’m a little child I feel love and consequently, value when:

My mother's eyes, voice, and face light up upon seeing me, rather than becoming dark, dreary, and sad.

Even if I'm not able to verbally respond, my aunt talks to me using my name, rather than about me with impersonal pronouns as though I'm not there.

My grandfather spends time with me, telling stories rather than letting me sit alone in front of the television.

My uncle casually helps me get my jacket on so we can go the park, rather than making a big fuss like I'm slowing everyone else down.

My brother listens to me when I say, "you're treating me like a baby," and responds, "you're right, I'm sorry," rather than laughing at me or ridiculing me.

My grandmother enthusiastically greets me when I come to her house, rather than complaining about the work she had to do to accommodate my needs.

My father cleans up my drool or my dirty diaper with matter-of-fact simplicity, rather than shaming me about bodily functions over which I have little control.

My caregiver seeks to understand me when I ask a question, rather than becoming annoyed with me.

My stepmother holds me with a strong yet gentle touch making me feel safe and secure, rather than with a tentative hold leaving me to feel both dirty and frightened.

My young cousins follow the example of my inclusive adult relatives, finding ways to have fun with me, rather than giving up without even trying.

My godmother learns some sign language so she can communicate with me directly, rather than relying on my parents to be intermediaries.

My parents’ longtime friend rejoices in the fact that I exist, rather than talking about what a burden I must be.

My parents correct a neighbor who laments the hardship a disabled child must bring to their lives, and articulate my value, rather than list my needs and their fears.


The child's view of himself or herself is shaped by everyday life experiences and interactions. If a child with a disability feels loved, self-love and self-worth will follow.

Friends' true views come out when a child gets sick

Update - Cicely came through her surgery well, and her mom shares the hospital experience here. The mom learned more about the ableist world than she'd care to believe is true. She also thanks everyone for their prayers.


"God is taking your burden away."

"Maybe it's for the best."

Dave Hingsburger shares a painful letter from parents who are shocked to hear these horrible comments from friends when their previously healthy little girl, Cicely, suddenly becomes very ill.

The mom asks Dave for "loud prayers" - for people to pray for Cicely and wish her and her family well.

Dave prays loudly and beautifully for Cicely, her family, and our world. "I pray that all the prayers today for Cicely, for her mother, for her father, be loud enough to shatter prejudice and bring down preconceptions. I pray that they are loud enough that barriers tumble and doors are blasted open."

Amen.

I join in prayer for Cicely, her family, and our world.

Employment and the ADA

One of the speakers at the Coalition For Citizens with Disabilities in Illinois (CCDI ) conference was Howard Rosenblum, senior attorney for the Illinois advocacy organization Equip for Equality. Mr. Rosenblum gave a very informative presentation about the Americans with Disabilities Act as it pertains to employment.

Mr. Rosenblum explained the difference between essential functions of a job and non-essential functions of a job. He gave the example of an accounting job. Essential functions would include bookkeeping, skills with numbers, and the appropriate certification or education. Non-essential functions might include telephone communication and reading.

It is illegal for an employer to ask if a job applicant has a disability. The key point in determining suitability for a job is whether or not the applicant is capable of performing the essential functions of the job. A permissible question an employer can ask is, "Are you able to do the essential functions of the job with or without a reasonable accommodation?" Mr. Rosenblum said that, whether or not one has a disability, one can answer yes to this question. It is absolutely unnecessary to indicate "with" or "without", and it is illegal for the interviewer to ask any further questions about the existence of a medical condition or disability.

Mr. Rosenblum said that it's a tricky issue whether or not one should tell the interviewer that you have a visible disability before meeting in person. Sometimes if the interviewer knows ahead of time, he or she has time to worry. On the other hand, if the interviewer is surprised by a visible disability, he or she may be so distracted as to be unable to do an effective interview. While it is legal to ask for accommodations such as a sign language interpreter or a scribe for the job interview, Mr. Rosenblum recommended that when possible, the applicant supply his or her own accommodations for the interview. It is also legal to ask for alternative formats in a job interview.

Not being able to do the non-essential functions of a job is not a legal reason to be refused a job.

Reasonable accommodations must be provided to allow an employee to perform the essential functions of a job. An employer is not expected to make an accommodation that results in lower attendance or output requirements for the employee, is a safety hazard, or causes an undue hardship to the company. The employer is not expected to tolerate violent behaviors or provide personal care services for an employee.

Some examples of employment accommodations: restructuring of non-essential functions, modifying work schedules, and providing auxiliary aids and services.

Interesting statistics on reasonable accommodation costs versus benefits from the Job Accommodation Network (JAN):
20% of reasonable accommodations cost nothing.
Over 70% cost $500 or less.
The median cost is $250.
A company makes $35 for each $1 spent on reasonable accommodations. Some of the benefits include hiring and retaining a qualified employee, increased productivity, and decreased turnover costs.

Resources provided by Mr. Rosenblum:
Job Accommodation Network
Equip for Equality (Illinois advocacy agency, other states have their own agencies)
US Department of Justice ADA Home Page

A powerful week

This week I went to the Illinois state capital, Springfield, for the Coalition of Citizens with Disabilities in Illinois (CCDI) annual Disability Rights Conference. There were a variety of workshops on a number of topics such as disability myths (making the comparison of ableism with racism and sexism), disability law, particularly as it applies to employment, and disability bioethics (discussing Ashley X and state futility laws, such as the Texas one being applied to baby Emilio).

I was awarded the Markeeta Award, an award for a youth in Illinois pursuing social justice and disability advocacy. It is named after the first recipient of the award, Markeeta Vincer, who fought successfully to be included in the Chicago Public School System.

I learned about an important bill, HB 1256, that has passed the Illinois House and is currently going through the Illinois Senate. If you live in Illinois, I urge you to call or email your state senator and ask him or her to support this bill. House Bill 1256 is very important for people with disabilities who have the ability to work, but not necessarily full-time. I see this bill as being very important for me personally and to many others with disabilities and stamina issues.
Here's some information from CCDI on the bill:

"-Lack of access to affordable health care forces people with disabilities to work for less or not at all. The current program does not go far enough.
-House Bill 1256 allows people with disabilities to work more often or accept better paying jobs and would allow people with disabilities to earn up to $35,000 (instead of the current $20,000) while paying their share of Medicaid costs.
-House Bill 1256 would allow people with disabilities to accumulate assets to alleviate poverty and promote their independence and self-sufficiency without jeopardizing their health care coverage"

I "rubbed elbows" at the conference with other advocates that I'd heard about - Diane Coleman and Stephen Drake from Not Dead Yet, Mike Ervin, FRIDA advocates, and ADAPT advocates. (I felt like a bit of a groupie.) I had many interesting conversations and an enjoyable time in Springfield.

Carnival Day!

Be sure to check out Disability Blog Carnival #14 by Kay Olson from The Gimp Parade. The theme for this carnival is “Firsts”. Kay has put together a spectacular array of links and photos. You’ll find a diverse collection of disability firsts in religion, politics, history, and personal stories.

Protecting the Rights of Ashley X and Other Children

The Washington Protection and Advocacy System (WPAS) issued a report today on the results of their investigation of the "Ashley Treatment". (This agency investigates allegations of abuse and neglect of persons with disabilities in the state of Washington.) To read the full report of their findings and of the corrective actions required of the hospital click here.

"The sterilization portion of the "Ashley Treatment" was conducted in violation of Washington State law, resulting in violation of Ashley's constitutional and common law rights.

-The Washington Supreme Court has held that a court order is required when parents seek to sterilize their minor or adult children with developmental disabilities, and at the individual must be zealously represented by a disinterested third party in an adversarial proceeding to determine whether the sterilization is in the individual's best interests.
-Courts have also limited parental authority to consent to other types of medical interventions that are highly invasive and/or irreversible, particularly when the interest of the parent may not be identical to the interests of the child. Thus, the other aspects of the "Ashley Treatment" - surgical breast bud removal and hormone treatments - should also require independent court evaluation and sanction before being performed on any person with a developmental disability.
-The implementation of the "Ashley Treatment" also raises discrimination issues because, if not for the individual's developmental disabilities, the interventions would not be sought. Such discrimination against individuals because of their disabilities is expressly forbidden by state and federal law."

The WPAS explores why the violations occurred and states the corrective actions that Children's Hospital will take to protect the rights of children in their care. Some of those actions include: implementing "a policy to prohibit sterilizations of persons with developmental disabilities without a court order", implementing "a policy to prohibit growth-limiting medical interventions on persons with developmental disabilities without a court order", and including a disability rights advocate on the hospital ethics committee. The WPAS also states their plans to work with the public, health insurance companies, health care providers and disability advocates to improve services and supports for children with disabilities and their families.

First Loss

Each summer when I was little, my family would rent a cabin in Wisconsin. For me, a highlight of the vacation would be an afternoon of horseback riding. My dad and I would ride double on the horse. I would sit in front of him, leaning on him for support. My dad would hold me tight and keep me stable. I loved it! My horse was always a calm and friendly one. I would pet the soft, smooth fur and talk to my horse by name. I felt safe, while experiencing the up-and-down rhythmical movement of the horse. I especially enjoyed the thrill of the horse galloping. We'd ride a trail that went through the woods, feeling the cool breeze, listening to the chatter of the birds, and smelling the fragrant flowers and pine forest. The woods felt majestic and peaceful, and I felt contented exhilaration on that one hour trail ride.

One summer, when I was about eight years old, I was totally caught off guard when my dad told me he could not safely ride double with me anymore. I was shocked. I couldn't believe it. Why couldn't I do something that the rest of my family could do? Would I be able to go horseback riding when I got older? How could it be that my strong dad could not keep me safe on a horse? What else wouldn't I be able to do? I felt really sad about the loss of horseback riding on summer vacations.

I was at a turning point in my life. For the first time, I realized that my cerebral palsy presented me with some limitations. You might wonder how I made it to eight years old without recognizing this point. I suppose part of the reason had to do with cognitive development. But, I think a large part had to do with my parents’ commitment to do activities that the whole family could do. Also, my same age sisters didn't know any differently either.

There were other times as a child, when I saw able-bodied children doing things I wished that I could do. I had watched kids go off to baseball practice and would have loved to have joined them. Bike riding and rollerblading also looked like a lot of fun.

Although missing out on some activities made me feel down at times, I can't say that, as a child I ever wallowed in sadness. There was just too much life to be lived. There were so many fun things that I did do, like singing in a choir, participating in a theater summer camp, and swimming with an inner tube and lifejacket (I could play a mean game of freeze tag in the freedom of the water). My parents altered a Baby Jogger racing stroller so that we could go on hikes in the woods. I continued to enjoy the cool breeze, the chatter of the birds, and the fragrant smells of the forest.

Description of 1st picture: I'm about 6 years old, sitting with my dad on a brown horse getting ready to go on a trailride into the woods on a beautiful, clear day. I have a smile on my face.
Descripton of 2nd picture: I'm about 10 years old, sitting in a customized 3 wheeled stroller on a hiking path in the woods on a beautiful day. I am smiling. My dad is next to me.

Thoughts on Blogging Against Disablism Day

Tuesday’s Blogging Against Disablism Day was a rousing success. I have read posts that were thought provoking, sad, insightful, funny, and informative - all exploring the many varied aspects and perspectives on disablism. Thanks to everybody who read and commented on my post.

I feel enriched, encouraged and invigorated.

I didn’t really have favorites from the day. Each post was unique - it's worth reading every single one.

Here’s a sampling of quotes from the day:

"Bullies and teachers had made it very clear to me which of my traits were desirable and which were not. Every time I saw myself I saw all those undesirable traits to my disgust and shame."

"He was my grandpa who had gone blind but that was somehow different from him being a blind person to me at that time."

"In fact, the U.S. Supreme Court has been so hostile to disability rights that Congress has started to consider legislation that's aimed at restoring the employment discrimination oversight powers to the ADA."

"So how did anyone get the idea that it's abnormal to need services?"

"Maybe labor and delivery rooms would sound like this,
'It's a boy! No hair, dark eyes, 46 chromosomes! Congratulations'
or
'It's a girl! Blond curly hair, blue eyes, and 47 chromosomes! Congratulations!'"


"OK, then. Where are you all? Where are the hordes and hordes of disabled bloggers of colour? Huh? What? Where are you?”

"Your finally getting married to the love of your life. Do you:-
(a) Hold your wedding at a restaurant without an elevator, with multiple stairs over many different levels so that your nephew, who is a power chair user, can’t attend.
(b) Invite your neice to be your bridesmaid, knowing that her brother won’t be there to watch her.
(c) Tell your nephew’s family, when they offer to pay the difference it would cost you to change the venue to a more powerchair friendly place, that the day is not about your nephew - it’s about you.
(d) Consider your family and hold the reception in an accessible restaurant/venue so that the whole family can enjoy the day and watch you get married."

“Having chronic, invisible & controversial diagnoses also makes you aware that there’s a hierarchy of ‘acceptable’ illnesses.”

“Note that, discrimination against disabled people (at Ellis Island)wasn't a benign oversight, nor an unforeseen consequence of broader policy--disability discrimination was the policy.”

“So where are the self-reflective posts by nondisabled folks about ability, bodily privilege, fear of people with cognitive disabilities, or even angst about becoming impaired? Where is the recognition of participating in and privileging from an ableist culture?”

"We have a couple of people in our lives that have that "deer in the headlights" look whenever they're around us."

"So, there I am, in my wheelchair, waiting to cross the road. The total stranger next to me, having had a good, long, sideways stare, eventually says, “So what’s wrong with you then?”
My options would appear to be:
tell them what my disability is - which is no secret, but really none of their sodding business
say 'You first - what’s wrong with you?' - which will confirm them in their opinion that all disabled people are peculiar and embittered - after all, they were just trying to be nice!"


“. . . what if there was ableist discrimination, if the able-bodied encountered whispers, inaccessible buildings and transport, stares, intrusive and rude comments, and more?”(great 3 minute video demonstrating this point)