A Shadow Existence

Imagine that you are an African American posing for your driver's license renewal photo and the photographer, a state employee, paid by your taxes, says, "Cheese, Whiskey, [n-word]." Would it be a civil rights violation?

This actually happened: A person with a cleft palate had the state photographer, in the same situation, say, "Cheese, Whiskey, Harelip." Was that a civil rights violation?

This actually happened: A pwacp was starting to cross a city street when he heard a voice talking. The voice was saying, "Nobody likes you, nobody wants you, go away." It was a guy leaning his head out the window of his van, which he had stopped in the middle of the intersection. Was that a civil rights violation?

Just this last Christmas: A pwacp was waiting in the lobby of his apartment building for his ride to a family celebration. Another tenant went through the lobby on an errand; the same tenant came through on another errand a few minutes later. Then the apartment manager came out, and said "Oh, you're waiting for your ride." The tenant had reported the disabled person (who is elderly) as "suspicious." Was that a civil rights violation?

When it comes to civil rights, the disabled often lead a shadow existence. What would almost certainly be treated as a civil rights violation if it happened to a "minority" becomes a different matter, somehow, when it happens to disabled people, as if justice has two different ways of looking at discrimination, depending on who you are.

Two years ago this blog recounted a case of discrimination against a little girl with cerebral palsy:

An Ohio man faces one month of jail time for teasing and taunting a 10-year-old girl with cerebral palsy after a video of the incident went viral.

On Nov. 27, Judge John A. Poulos of the Canton Municipal Court sentenced 43-year-old William Bailey to 29 days in jail. ...

William Bailey "was dragging his leg and patting his arm across his chest to pick his son Joseph up," said [Tricia] Knight. "I asked him to please stop doing this. 'My daughter can see you.' He then told his son to walk like the R-word." ...

The next day Knight posted the video on her Facebook page while [Knight's mother-in-law, Marie] Prince uploaded the video they called "Bus Stop Ignorance" to YouTube. Within days, the video went viral. ...

A local assistant city prosecutor observed:

"I think when we look at cases, there's case law out there regarding people commenting and gesturing against race and religion. But ... there's nothing out there regarding disabilities ...." [What charge did the prosecutor use? "Menacing." Apparently no civil rights charge applies.]

The law has always been about what happens (i.e., was it a crime?), not who it happens to. Burglary is burglary, for example; and it's not supposed to matter if you're rich or poor, ethnic or "mainstream," able or disabled, a "person of faith" or otherwise.

But the Civil Rights Act (1) was implemented as protected class. It is not a law for everybody. It is a private law (literally, "privilege")(2) for those to whom it applies. Case in point, as reported in an earlier post:

Would the court system of a liberal society, sidestepping universal justice, treat "protected class" as a term at law? One has only to read the news:

Publication: The Spokesman Review - Publish date: March 2, 1996

A state judge supports an earlier court ruling giving Spokane restaurants the right to refuse service to Hells Angels wearing their club insignia.
Spokane County Superior Court Judge Neal Rielly, in a written ruling released Friday, says members of the biker gang aren't a "protected class" under state or federal discrimination laws.

 The enshrining of "protected class" in the law of the land (despite the first Justice Harlan's objection "Our Constitution is color-blind and neither knows nor tolerates classes among citizens") has had sinister consequences for the disabled. The state driver's license photographer, above, probably wouldn't have used the n-word with an African American applicant. He did use the h-word with a disabled applicant.

The authors of the Civil Rights act probably never dreamed that exclusion from protected class would be taken by many as rendering a certain group of people "a stranger to [our] laws."(3) As Romer v. Evans later went on to suggest, such jurisdictive tactics can tend to "make them unequal to everyone else."

Welcome to civil rights American style. If you're disabled, you're not in the class protected from slurs and slights, "commenting and gesturing," bullying and menacing, and profiling. You're a second class citizen, and the mean and the bigoted (see above) have figured this out. Welcome to constant and pervasive marginalization. Welcome to "life" in the shadows.



(1) The Civil Rights Act of 1964, which ended segregation in public places and banned employment discrimination on the basis of race, color, religion, sex or national origin, is considered one of the crowning legislative achievements of the civil rights movement. - http://www.history.com/topics/black-history/civil-rights-act [Note that disability is left out.]
(2) The Google search for "privilege," under Word Origins, notes the word's roots as privus, "private," and lex, "law."
(3) We must conclude that Amendment 2 classifies homosexuals not to further a proper legislative end but to make them unequal to everyone else. This Colorado cannot do. A State cannot so deem a class of persons a stranger to its laws. Amendment 2 violates the Equal Protection Clause, ... - Romer v. Evans [Note that deeming "a class of persons a stranger to its laws" is thought to "make them unequal to everyone else".]

A Writer on Living with Depression

It boiled down to this: I decided that my life, as I had known it, was over. I was never going to get back to the job I had when I was 25 years old, making $65,000. I was never going to get married and father children. It was time to put a fork in those dreams—I couldn't reclaim them. That me was dead and done, and I was reconciled to that. - Philip Dawdy, on his mental illness

A decade back, Philip Dawdy wrote an article for the Seattle Weekly about Rodney Plamondon's mental illness, and his own.

We post portions of his article in case they may provide perspective for people with disabilities related to his. Note that Dawdy finally resorted to a solution which went against much of the medical advice for people with his condition. While he claims that this worked for him, what he did was risky, and may well be the wrong approach for most others in a similar situation.

Dawdy begins:

He was in the hospital the day he learned he had been elected to the Phi Beta Kappa Society. Rodney Plamondon looked for a while at the letter that told him this. He was pleased. He was the 22-year-old son of a long-haul truck driver. Rodney's future wouldn't involve driving a Kenworth.

This was good. He had dreams. He had aspirations of doing graduate work in the classics at an Ivy League school, of teaching after that. Or entering the Foreign Service. Getting into that honorary society wouldn't hurt his chances at either.

Rodney put the letter away. He had more pressing concerns.

He was, on this July 1984 day, in the psychiatric unit of a hospital in Boise, Idaho, his hometown. He was newly diagnosed as a paranoid schizophrenic. Rodney hadn't the slightest idea what this diagnosis meant for his world, but he knew that his life had changed dramatically.

Dawdy goes on to describe the effects of orthodox [drug] treatment on Rodney:

Rodney is still staring at the dark walls of the tunnel. In the past year, he's been in and out of psych units in Seattle eight times. He's lost pretty much everything—his furniture, his computer, his cat, and every scrap of fiction and poetry he had written over the past 20 years. He takes Haldol and Clozaril twice a day—powerful antipsychotics. Rodney sleeps 12 hours a day on average, sometimes 15. On his left cheek, there are flakes of skin where the pillowcase has rubbed him.

Some days, when he leaves the building, he looks as though he's been mugged and beaten. Those are his good days. Other times, the bad days, he's too paranoid to step outside.

"It happened to me that way, too," Dawdy wrote,

a psychotic break out of the blue during a twentysomething life that had been shaping up quite nicely. It was difficult to build a new life out of that. There were many, many setbacks. That's the absurd deal of mental illness: You get taken most commonly in your youth, when life is just beginning to gel. You get an illness that, in many cases, is so disabling that it strips you of the psychological and practical goods essential to a decent existence. Often you get kicked right out of the mainstream, no matter how solid a citizen you were before it all went bad.

What are you going to do about that?

You have three choices: kill yourself, lead a featureless existence, or fight back and extract some measure of revenge on that which laid you low. Rodney and I rejected options one and two. Option three is no cakewalk. It takes years of determined effort before you see light at the end of the tunnel, and as you feel your way along, you've got to do it all on blind faith that something good might happen. After 15 years, I'm finally beginning to see a faint glow.

Dawdy describes his eventual realization dramatically:

You will stay awake at night and gnaw on that problem, probably for years. You'll likely struggle with some level of suicidal tendency. You're broke, mentally, physically, and financially. Some in your family and circle of friends have cut off contact. Rodney hears from his father perhaps once a year, usually by letter (his mother died in 1987). You wind up hating yourself because these consequences seem thoroughly logical.

What makes things dicey is that what you've got is episodic. You can take your meds and keep appointments with every doctor and social worker under the sun and yet, nine months later, bam, here comes another round of mania. Hello, locked psych unit. Goodbye, job and apartment. Stabilize. Repeat.

I was beset by the same cycles during my 20s and 30s. Meds followed meds, 16 in all. Breakdowns followed breakdowns. Nothing seemed to work for very long. I lost jobs at a healthy clip.

Amidst this whirl of disorder, I learned three crucial things. One, I wasn't going to kill myself. Second, I had far more power over my fate than any doctor ever let on. Third, the existentialists weren't joking: The world is truly absurd.

I'd like to claim that one night I was visited with a revelation about how to grapple with this. It was a far lengthier process.

It boiled down to this: I decided that my life, as I had known it, was over. I was never going to get back to the job I had when I was 25 years old, making $65,000. I was never going to get married and father children. It was time to put a fork in those dreams—I couldn't reclaim them. That me was dead and done, and I was reconciled to that.

That kind of truth will set you free. It will free you to take the kind of risks you'd never take if you were trying to realign yourself with the life you once lived and the goals that once got you out of bed each morning.

Also, it freed me to be pushier with my doctors about what meds and how many of them I would take. I couldn't, for example, tolerate the amount of sleeping caused by antidepressants. My doctor reacted as if no patient had ever bossed him around before.

Dawdy's decision was to endure bouts of depression instead of taking antidepressants at the recommended level. "I can't approve of this, of course," his doctor said.

Here's what he lives with:

When I get my semiannual visits of depression, I can't leave my apartment for days at a time. I can't listen to music of any kind. It all becomes grating and metallic—not even Mozart can punch through that mental pea soup.

Dawdy reflects on our society's treatment of the mentally ill:

As a country, we've spent the past 40 years trying to figure out what to do with people like Rodney, for our sake as well as theirs.

In the 1960s, he'd have been confined at a state mental hospital. That isn't too humane and costs a fortune, so we've mostly backed off that reflexive reaction to the chronically mentally ill. By the mid-1980s, people like Rodney were being pushed onto the streets. We tried to de-institutionalize them on the cheap and failed to provide housing. Oops.

But soon after, all the Prozacs and Risperdals came onto the market. They were a better deal than restraints in a state hospital or the old psych meds like Thorazine or the hazards of the streets.

And that was that, we figured. The meds are a cure, and we're saving money by not hospitalizing these folks. Let them live among the rest of us and go to work in the morning and pay bills in the evening. Let's get as many of them as we can off the public dime.

So what's next for someone like Rodney, assuming he's reasonably lucky and stabilizes? The way things are now, probably not much.

Are you going to hire him? He's barely worked in the past five years, and frankly, the man is too smart to find much satisfaction in pushing a broom in an office building. Will your family take him in? His own family has spent the past 20 years spurning him. Want to marry him?

You know the answers.

I once worked with a nice guy who had Tourette's Syndrome. I was sitting in the break room with him when he suddenly said, "Hey [n-word] fat [n-word]." "Huh?" I said. He looked at me in surprise. Touretters are often unaware of their involuntary outbursts.

I ran into him in a Toys'R'Us years later. It was explained to the other customers that he wasn't in control of what he said. Many of them refused to accept this. They thought it was just an excuse to get away with unacceptable conduct.

What would it be like to have your id broadcasting to the world without your control?

Philip Dawdy's solution to his mental illness, if it actually was as he describes, is anecdotal. He does not, for instance, seem to imply that it would work for Rodney.

But public understanding and acceptance toward the afflicted can make life workable for many. The customers who took a moralistic approach to the guy with Tourette's weren't making anything better for anyone.

Access Has Been Improved; Social Attitudes Lag Behind

In A Recent Book on the Civil Rights of the Disabled, the "recent book," What We Have Done, documented the creation of the Americans With Disabilities Act as a nationwide campaign for better access for people with mobility problems and other physical disabilities. That is one of the nation's great achievements. The United States has become one of the most advanced nations in, for example, providing wheelchair access in architecture and transportation.

Yet stigma and social discrimination still keep millions of disabled people on the margins. For example, previous posts have discussed news articles on the discrimination against people with cerebral palsy here, here, here, and here, among others. The pervasive discrimination against people with cleft palate is discussed in many posts.

Randy Rutta observes that as the 25th anniversary of the ADA approaches, disabled people still suffer from significantly higher unemployment rates compared to the rest of the population:

The unacceptable unemployment situation for adults with disabilities is a troubling irony as the nation prepares to commemorate the 25th anniversary of the Americans with Disabilities Act. The landmark civil rights legislation, signed into law by President George H.W. Bush on July 26, 1990, outlawed discrimination on the basis of disability.

He describes the areas in which the disabled were marginalized and disenfranchised at the time of the law's enactment:

The text of the law laid bare the hurdles that people with disabilities faced at the time. "Discrimination against individuals with disabilities persists in such critical areas as employment, housing, public accommodations, education, transportation, communication, recreation, institutionalization, health services, voting, and access to public services," the law said.

The ADA established the nation's goals for individuals with disabilities "to assure equality of opportunity, full participation, independent living, and economic self-sufficiency for such individuals."

And Rutta notes that not just access, but "discrimination and prejudice" present barriers to equality for the disabled:

The law affirmed that discrimination and prejudice denies people with disabilities the opportunity to compete. But it also recognized the huge societal downside of keeping people with disabilities on the margins — workplace discrimination costs the country billions of dollars resulting from dependency and nonproductivity.

It is significant that in What We Have Done there are dozens of examples of ways in which the ADA has improved physical access, but the book does not mention people with cleft palate, whose primary problem is discriminatory social attitudes, not access.

Your Rights under Section 504 of the Rehabilitation Act

If you work for any entity which receives funds from the federal government, the following would seem to imply that disability discrimination by your employer violates federal law:

Section 504 of the Rehabilitation Act of 1973:

No otherwise qualified handicapped individual in the United States, as defined in section 7(6), shall, solely by reason of his handicap, be excluded from participation in, be denied the benefits of, or be subject to discrimination under any program or activity receiving Federal financial assistance. (Cited in What We Have Done: An Oral History of the Disability Rights Movement - Fred Pelka, 2012)

Wikipedia's article on Section 504 adds:

Codified as 29 U.S.C. 794.
According to this law, Individuals with Disabilities are:
"persons with a physical or mental impairment which substantially limits one or more major life activities."

 where

"Major life activities include caring for one's self, walking, seeing, hearing, speaking, breathing, working, performing manual tasks, and learning."

In a previous post we noted cases "where the august Court cruelly denied protection to disabled individuals even though the intent of the Americans With Disabilities Act should have been clear. As the Times noted, The court went wrong by “eliminating protection for many individuals whom Congress intended to protect” under the 1990 law." The Disability Rights Education and Defense Fund website notes another case where Congress found it necessary to pass a law undoing unreasonably restrictive Supreme Court interpretation of Section 504 and other disability rights legislation:

The longest legislative battle was fought over the Civil Rights Restoration Act (CRRA), first introduced in 1984 and finally passed in 1988. The CRRA sought to overturn Grove City College v Bell, a Supreme Court decision that had significantly restricted the reach of all the statutes prohibiting race, ethnic origin, sex or disability discrimination by recipients of federal funds.

An important decision overturned was a case where the Court interpreted Section 504 as meaning that only clients of the departments of an entity which actually received federal funds had protection from disability discrimination. Under current law, because of the CRRA, protection applies to the entire agency. If a college's engineering department receives federal funds, students in the English department are also protected.

There was also foot-dragging on implementing Section 504:

Section 504 was the last sentence in the 1973 Act. However, initially Joseph Califano, U.S. Secretary of Health, Education and Welfare, refused to sign meaningful regulations for Section 504. After an ultimatum and deadline, demonstrations took place in ten U.S. cities on April 5, 1977. The sit-in at the San Francisco Office of the U.S. Department of Health, Education and Welfare, led by Judith Heumann and organized by Kitty Cone, lasted until May 4, 1977, a total of 28 days. More than 150 demonstrators refused to disband. This action is the longest sit-in at a federal building to date. Joseph Califano signed the regulations on April 28, 1977.

The Reagan administration, in addition to attempting to weaken the Voting Rights Act, attempted to undermine Section 504 when it came into power:

Over the next several years, Section 504 was somewhat controversial because it afforded people with disabilities many rights similar to those for other minority groups in the Civil Rights Act of 1964. Throughout the Reagan administration, efforts were made to weaken Section 504. Patrisha Wright and Evan Kemp, Jr. (of the Disability Rights Center) led a grassroots and lobbying campaign against this that generated more than 40,000 cards and letters. In 1984, the administration dropped its attempts to weaken Section 504.

When any governmental agency's employees discriminate against the disabled, they are acting in the name of the taxpayers who fund them. For example, public transit organizations receive substantial federal assistance. So does every state. We know of a case where a disabled person, having his driver's license renewed, heard the state photographer say, "Whiskey, cheese, harelip." That bigoted employee was acting as a proxy for the public. When he attempted to demean, degrade and intimidate a citizen making a required license application, he represented you and me.

Whether the license applicant could have sought redress under Section 504 is unknown. Public action under Americans with Disabilities legislation and Section 504, to date, has been entirely about access, with notable success. Protection from discriminatory attitudes and acts designed to humiliate, marginalize, and disenfranchise the stigmatized disabled, hasn't even begun. As an earlier post cited:

There's case law out there regarding people commenting and gesturing against race and religion. But ... there's nothing out there regarding disabilities. - Assistant City Prosecutor Jennifer Fitsimmons

My dream is an American dream, that one day America will rise up and live out the meaning of its creed, that all are created equal.

A Recent Book on the Civil Rights of the Disabled

This is a collection of notes, with comments, from What We Have Done: An Oral History of the Disability Rights Movement - Fred Pelka, 2012

In the first post of this weblog, we wrote:

A reciprocity principle: If a remark or an action or an attitude would be seen as discriminatory if directed toward a minority, it is discriminatory for us. We have exactly the same civil rights, even if the justice system does not act as if we do. 

 As Pelka writes, "People with disabilities are an oppressed minority with protected rights." (p. 3) He continues:

Robert Funk . . . has recounted the history of what he calls "the humanization of disabled people" in America as the journey of individuals with disabilities from "objects of pity and fear . . . who are incapable and neither expected nor willing to participate in or contribute to society" to a "disability rights movement" which maintains that "disabled people have the constitutional and human right to equal citizenship, that is, the right to be treated as a person worthy of dignity and respect." (p. 4)

Our first post continued:

People with cleft palates bear two stigmas: the stigma of disability; and the stigma of birth condition, which is considered guilt by many. An example of the latter from the 1st Century: Paraphrasing John 9:2, "Master, did this man sin . . . that he was born thus?"

Pelka:

Americans with disabilities have generally found themselves, as the activist Justin Dart Jr. put it, the nation's "poorest, most oppressed group." ...

"The persistent thread within the Christian tradition," writes theologian and sociologist Nancy Eiesland, "has been that disability is either divinely blessed or damned: the defiled evildoer or the spiritual superhero." ... [In parts of the third world] religious tradition regards disability as a form of "divine punishment" for alleged sinfuless. (p. 5)

Social attitudes can render the disabled the scapegoats of our society:

Rosemarie Garland-Thomson: "According to [Melvin] Lerner, the human need for order and predictability gives rise to the belief that people get what they deserve or that the way things are is the way they should be....if something 'bad'—like having a disability—happens to someone, then there must be some 'good' reason—like divine or moral justice, for its occurrence." ... it results in victim-blaming and scapegoating of those who are different. (p. 6)

In This is the Son of Kings, we suggested that the classic tragedy Oedipus the King paralleled the traditional treatment of a baby with a club foot disability in some Greek city-states. Pelka:

According to [Henri-Jacques] Stiker, the religious systems of Graeco-Roman antiquity were even less tolerant . . . In both ancient Athens and Sparta infants with disabilities were "exposed," taken "outside to an unknown location and [left to]...expire in a hole in the ground or drown in a course of water." The birth of disabled infants was believed to "signal the possibility of misfortunes and are [sic] explained by the anger of the gods. Deformed infants are exposed because they are harmful, maleficent. They implicate the group." (pp. 6-7)

In Internalized Discrimination: You're Not Supposed to SAY That, we suggested a powerful social pressure to remain silent. Pelka:

Robert Garland: "[The disabled were generally held in disdain] both by their families and by society at large. ... The disabled themselves were encouraged to feel a certain shame for their own physical condition." Disability rights activists today would call this "internalized oppression"—the absorption by oppressed people of the judgments and assumptions of the majority culture. p. 7

In the last note taken so far from Pelka's book:

Tim Cook: "Persons with disabilities were believed to simply not have the 'rights and liberties of normal people.'" (p. 11)

In a post November 26, 2014 we wrote:

“Spoiled Identity”: When the Disabled Are Not In “A State of Society” - In Pauline Maier's American Scripture we find:

In June 1776 the Virginia Convention ... amended the ... draft so it said that "all men are by nature equally free and independent" and had "certain inherent rights" ... "when they enter into a state of society." The statement ... freed the state of Virginia from an obligation to recognize and protect the inherent rights of slaves since ... slaves had never entered Virginia's society, which was confined to whites. - Pauline Maier, American Scripture: Making the Declaration of Independence, p. 193 (Emphasis added)

The post continues:
What is significant here is that the basic human rights—normal human rights—are not guaranteed simply because a person is human, but only if society accepts the person. The "spoiled identity" which sociologists recognize in such stigmatized people as the disabled, and especially those with birth defects, often means a specific lifetime exclusion from society. The results, as implied by the following defamatory passage from the Time Magazine web site, can be devastating:

Another six months of Monica, have mercy; I don't care if it harelips the Governor. - Molly Ivins, Time.com

The sociologist notes that the effect is reduced "life chances": 

Goffman [says] “The term stigma, then, will be used to refer to ... a special kind of relationship between attribute and stereotype” (2). [1] Observing that “the person with stigma is not quite human” (3), Goffman explains that the our unconscious assumptions lead us to “exercise varieties of discrimination, through which we effectively, if often unthinkingly, reduce his life chances.”

What Others are Saying

Back in 2013 the post Imagine That America Had Its Consciousness Raised included the following among its recommendations:

Institutions (meeting places, organizations, "meet people like you" events, etc.) to counteract the social isolation of many disabled people.

An article in Huffington Post, iPhone App Connects People With Cerebral Palsy, introduces an interesting idea: a special-purpose communication app:

The idea for Candor CP materialized when Alexis learned the power of connecting with other people who have CP over social media. ... His main issue is that whatever he posted on existing social media was public, had his name associated with it and would often get viewed by a larger audience than he preferred. ... Candor CP lets users chat with each other anonymously. It encourages open, safe communication about issues that may be too private to talk about on public social media. The sign-up process is simple. You create an account using an email address and a password. You don't have to worry about usernames, avatars, share settings or linking to Facebook, Twitter and other social media sites. When you post a comment, the app assigns an avatar that is unique to each thread. ... Alexis interacts with adolescents and young adults who have CP on his blog. ... While sharing his story, he realized that young adults with CP would benefit from connecting with other people their age who have the same disability. There wasn't a supportive community with people like him years ago.

Perhaps a Let's Talk app, or a You're Not Alone app, for those wrestling with the isolation and stigma of disability, would fit under the What We Can Do tag. Preliminary thinking is that it could have interest group areas (CP, those with Cleft Palate, Little People, etc.). A way for those interested to offer suggestions to the app designers.

On a related topic, Daniel J. Vance has a long-running newspaper column on disability topics. Here's something he said about The Loneliness of the Disabled Person:*

Especially for widowed or single people with any type of disability, the holiday season can become a very lonely stretch, often involving depression. ... People sometimes tell me they don't know anyone that has a disability, but statistically that isn't possible, unless, of course, you were raised by wolves and live alone in the mountains. Perhaps every individual residing in a nursing home, for instance, has a disability.

After they say they don't know anyone, I often ask something like this: So you don't know anyone with dementia, cerebral palsy, dyslexia, severe arthritis, renal failure, chronic illness, multiple sclerosis, an amputation, schizophrenia, lupus, traumatic brain injury, deafness, blindness, cerebral palsy, autism, Down syndrome, an intellectual disability, an ostomy, cleft lip or palate, epilepsy, glaucoma, spina bifida, paralysis, fetal alcohol syndrome, stroke, muscular dystrophy, or hundreds of other disabling conditions, or anyone with a significantly impaired ability to walk, talk, eat, sleep, drive or work?

Recently, I searched online for academic research to back up the claim people with disabilities experience more loneliness year around—not just during the holidays—and actually found too much information to fit into any one column. ...

So people with disabilities, in general, experience more loneliness than the rest of the population, sometimes because of being less verbal or unable to physically get out to meet others or just plain due to having fewer social skills.

Nicole Luongo tells My Cerebral Palsy Story:

My mom took me to the doctor for a follow up visit and expressed her concern. He looked at her straight in the eye and said, “she should not be walking at all. She is a miracle.” Learning to walk without assistance was not easy. First, I wore braces up to my knees. Then, just in time for Kindergarten, I wore full-length hip braces. As you can imagine, the other kids teased me constantly.

Eventually, I learned to walk on my own. Now, as an adult, I am experiencing problems associated with CP and the constant stress on my body. I tire easily when walking. If I walk too much, I can experience back pain. I have problems stepping up curbs with my right leg – something I never had problems doing until five years ago. This continued to be a such a problem that I asked my orthopedist for a cane. I couldn’t bring myself to use it. I could continue to have these problems and more as I age, possibly requiring the use of a wheelchair. I do not want this to happen to me!

Although I work out and try to stay active, my balance and flexibility are poor due to CP and the tightness (spasticity) it causes. Selective Dorsal Rhizotomy (SDR) is the only procedure that can permanently eliminate the tightness in my legs. This surgery will allow me to do things I’ve never even imagined – walk with greater ease and fluidity, have better balance and flexibility – just to name a few. One thing I’d love to do is ride a bike. SDR may make that possible!

Read her blog for the story of her SDR surgery.

Independencechick (read her blog!) exclaims:

Am I saying PWDs and their loved ones should just completely ditch all services meant to help them? That’s not my call. It’s an individual decision you must make based on where you live, what you need, and what you want. What I am saying to you is that I think we’re spending way too much time on programs, and not enough time helping PWDs acclimate to society and feel like a real part of it. Instead of shuffling from service to service, what if PWDs were born into their communities and became community members? And, if programs are absolutely necessary: what if the people running those programs started paying attention to the people they’re trying to serve?

Note that some disabilities don't have services and programs, beneficial or otherwise, particularly when they become adults. Imagine That America Had Its Consciousness Raised


(*) Alan Sillitoe's The Loneliness of the Long Distance Runner is a classic published in 1959

Today's Invisible Man: The Powerless, Outsider Disabled

I'd like to be assured that if I stand up for myself against an aggressor, I'm going to be supported, not judged. - Sarah Neilson, below

Kenji Yoshino last week in Slate:

The Supreme Court has deemed “political powerlessness” to be a factor in determining whether a group could receive the heightened judicial protection that women or racial minorities currently receive. ...

The paradox of political power is that a group usually must have a massive amount of political power before it can be deemed politically powerless by the Supreme Court. Groups that are truly politically powerless usually cannot garner the attention of any branch of government, including the judiciary.

Professor Yoshino was talking about gay marriage jurisprudence, not the litigative status of the stigmatized disabled, but the situation he describes applies to us: we are not even powerful enough to be considered worthy of care as politically powerless. "A State cannot so deem a class of persons a stranger to its laws," said the Supreme Court in Romer V. Evans, but in the current situation discrimination against the disabled is largely beyond legal regard*.

Being Invisible: When the Disabled Are Not In “A State of Society” - In Pauline Maier's American Scripture we find:

In June 1776 the Virginia Convention ... amended the ... draft so it said that "all men are by nature equally free and independent" and had "certain inherent rights" ... "when they enter into a state of society." The statement ... freed the state of Virginia from an obligation to recognize and protect the inherent rights of slaves since ... slaves had never entered Virginia's society, which was confined to whites. - Pauline Maier, American Scripture: Making the Declaration of Independence, p. 193 (Emphasis added)

The disabled are also largely beyond social moral regard*: Society, instead of objecting to public discrimination against the disabled, pretends that discriminatory conduct is normal social action. Sarah Neilson, in The Stranger, described incidents she experienced:

When I remarked to a bookstore owner about the proliferation of memoirs in this age, she told me she had tired of, in particular, cancer memoirs. "Cancer is a reality," she said. Then she looked at me with sad eyes. "But cerebral palsy is a reality, too." I said, "Uh, yeah, and I don't write about it," and left the place in a daze. I've never had anyone assume I was sick, so at first I didn't even realize that she was comparing cerebral palsy to cancer. I've never felt comfortable going back in; I'm a little uneasy walking by. The worst part is knowing that she thought she was being nice.

So did the spandex-wearing passerby who told me on a steep street, "You are so brave." I told him I was offended; he said, "I wish I could help you." He didn't take in a word I said. ...

One night, after a beautiful day of hiking, we passed a guy on the way home who hassled my boyfriend for money. I was prepared to ignore the question. But when I walked by, he didn't ask me for money. He shouted, "WHO DID THIS TO YOU?! WHO DID THIS TO YOU?!"

I kept walking. Then he shouted, "WAS IT HIM?!"

That scared the shit out of me. He'd accused my boyfriend of violence and looked quite ready to commit some himself. From all my fear, and my anger, and the burning insult of the accusation, I yelled back:

"BIRTH! I WAS BORN TWO AND A HALF MONTHS EARLY, YOU FUCKER!"

He ran.

I was relieved. Then I noticed several people across the street, all staring at me. Were they on his side? Did no one see the potential danger of the situation? Remember the crutches? If someone goes after me, I'm fucked, y'all. I'd like to be assured that if I stand up for myself against an aggressor, I'm going to be supported, not judged.

It's no better, though, to be simply ignored. A Sea-Tac Airport TSA agent fixed his eyes on my boyfriend while asking for my boarding pass. When I asked him to address me directly, he said, "Oh!" and apologized. "I'm used to talking to... you know," he said, gesturing in inscrutable circles.

"To what?" I asked.

"Talking to people and... talking to their caretakers."

Helplessness is an offensive assumption, but one I can swiftly disprove. How, though, can I convince people that there is nothing tragic about the way I walk? I ran into a pair of sweet parents with three adorable children, and the youngest child said, "She has a owie," so I explained that I was born this way and didn't get hurt.

"Some people need tools to help them," added the mother. "It'll heal."

"No," I said lightly, "it won't heal, but that's okay." I don't get a body other than this one, so it has to be okay. Why can't we tell our children, and each other, that all bodies are different, that some need more help with certain things than others, and that's fine?

Is it because it's not?

A comment to Ms. Neilson's article scolded her for objecting to this sort of disability discrimination:

So you reject:

empathy
normal Seattle passive-aggressiveness
an obviously crazy homeless person
someone who mistakenly talks to your boyfriend instead of you
a mother who was caught in a sudden confrontation
Honey, those are all things we all deal with. It's called the real world.

No, these are things which, in the context of the person who is different, are intended to marginalize them. "Being treated as different" is a recognized indicator in anti-harassment guidelines. Remarks and actions which would be innocuous in ordinary circumstances are instantly recognized as singling out the disabled person. They are not part of the ordinary rough-and-tumble of social interaction. They are intended to demean and degrade the disabled.

Ms. Neilson was not being overly sensitive in calling out disguised discrimination. She was subverting a smelly little orthodoxy which says the disabled are not supposed to stand up for themselves against an aggressor.

Some of the epigraphs to an earlier post, Internalized Discrimination: You're Not Supposed to SAY That:

And my feeling wasn’t righteousness or pride in having told the truth, it was horror that I had committed such a faux pas, and that if things like that happened you just weren’t supposed to talk about them. And you certainly weren’t supposed to announce it at a dinner party. - Kate Christensen

The political sphere is where you engage with your humanity. You have not merely a right, you have an obligation to participate, to make sure the people, as a whole, are able to make good decisions, and pass good laws and treat you as a human. And if one group subjugates another, if it says 'You can talk about anything you want, except everything that matters to you,' then you are not a full member of the polity. - Eric J. Miller (Emphasis Added)

The averted gaze and a smothering of empathy - Matthew Scully

The just-world hypothesis works, in part, by blaming the stigmatized disabled for the pervasive social targeting which marginalizes and disenfranchises them. A familiar experience of our people is the case where our family, friends, or co-workers imply that we should have done better, considering our background; and completely ignore the crucial fact of our lives: Discriminatory social attitudes reduce our life chances. It is considered divisive and socially unacceptable to speak out about our situation.
 
We who write this remember that most of our lives we ourselves kept silent. And there is an internal struggle against convention every time we add another post to this weblog. A struggle against the tendency to feel guilty about having been honest about a situation which is widely covered up.


 (*) In Age of Ambition Evan Osnos speaks of "a deeper problem underlying China's rise: pervasive corruption and a moral disregard that had already led to milk tainted by chemicals reaching the market." (Emphasis added)

The Largest Minority

The US Office of Disability Employment Policy states:

Although the term is most often used to refer to differences among individuals such as ethnicity, gender, age and religion, diversity actually encompasses the infinite range of individuals' unique attributes and experiences. As the nation's largest minority — comprising almost 50 million individuals — people with disabilities contribute to diversity, and businesses can enhance their competitive edge by taking steps to ensure they are integrated into their workforce and customer base. (Emphasis added)

Comment: You'd never know it. The nation implements justice for minorities by several means: Protected class. Affirmative action. Heightened scrutiny concerning the effect of presumably neutral laws. Lawsuits concerning harassment, defamation, bullying, unequal pay, inequity in hiring practices, social exclusion. It is not that all these things necessarily belong in a liberal democratic society. In some cases they are inferior substitutes for justice. Protected class and heightened scrutiny look suspiciously like privilege.* Affirmative action, with its relationship to quotas and its adverse effect on merit hire and promotion, looks like favoritism.

But these are the currently operative ad hoc substitutes for actual justice. It is telling that people with disabilities are excluded. A news article from late 2012 concerning a child with cerebral palsy noted:

There's case law out there regarding people commenting and gesturing against race and religion. But ... there's nothing out there regarding disabilities. - Jennifer Fitzsimmons, the chief assistant city prosecutor in a rare case where legal action was taken

A year ago a courageous young woman with cerebral palsy wrote about the discriminatory reaction she often experiences in a supposedly progressive city:

I was born with cerebral palsy, and though I'm 30 years old, I didn't really accept that until I moved to Seattle last June. It was something I hid from, something I denied, and it was relatively easy to do so, because a lot of people seemed to notice other things about me before they noticed that. ... In Seattle, though, a lot of people seem to be a little unnerved by my disability, ... But I was caught entirely off guard by this sudden understanding that being alive in the only body I've got apparently makes some people uncomfortable in 2014, in one of America's most progressive cities. I moved here for books, coffee, writing, nature, food, even rain—not a daily crusade.

If she had been a member of the recognized minorities—a protected ethnicity, race, gender, or sexual orientation—the response would have included a lot of people saying, in effect, Yes, we still need to do more about the civil rights of minorities. Instead, there was a lot of backlash.

Many of those who quickly object to minority discrimination deny disability discrimination even as it is happening right in front of them. As commenter jacalope observes "The prevailing attitude seems to be that":

1. My disability isn't real
2. My disability is my own fault
3. If I tried harder I could just get over it
4. I'd magically get over it if I only tried my new acquaintance's latest diet/supplement/acupuncturist/exercise regimen

Why are these discriminatory attitudes alive and well in what Sarah Nielson called a "progressive city?" Because, since the civil rights revolution, discrimination against the minorities addressed by that revolution is subject to punishment under the laws. Social attitudes followed. "No colored need apply" notices were replaced by affirmative action. Society got the message. No one would think of telling a person of color, who described a discriminatory incident or attitude, to "just get over it."

Who is covered and who isn't covered sends a message. There's no affirmative action for cerebral palsy, for cleft palate, for little people, or for all those who are born different (unless the difference is race or gender). "There's nothing out there regarding disabilities," said Assistant City Prosecutor Jennifer Fitsimmons, above. That is, there has apparently never been a landmark civil rights case regarding a disabled person.

Again, society got the message. anonymous:

So you reject:

empathy
normal Seattle passive-aggressiveness
an obviously crazy homeless person
someone who mistakenly talks to your boyfriend instead of you
a mother who was caught in a sudden confrontation

Honey, those are all things we all deal with. It's called the real world.

An article defaming those with birth defects has resided on the Time.com website for over a decade:

Another six months of Monica, have mercy; I don't care if it harelips the Governor. - Molly Ivins, Time.com

Again, the double standard is evident. Would the public have stood for the above remark if Ms. Ivins had used the n-word instead of the h-word? For that matter, would Time have published the article unedited with the n-word?

It's unthinkable. But in the case of the largest minority, it attracts no attention.
 
 (*) "Privilege": "Private Law"

From Around the Web, Ctd

This follows on a post from July 2013.

Sarah Blahovec posts on disability issues.

The Disability Rights Education & Defense Fund has informative articles and was the source of some of the following links.

The U.S. Department of Education posts Dear Colleague letter regarding disability harassment:

When harassing conduct is sufficiently severe, persistent, or pervasive that it creates a hostile environment, it can violate a student's rights under the Section 504 and Title II regulations. A hostile environment may exist even if there are no tangible effects on the student where the harassment is serious enough to adversely affect the student's ability to participate in or benefit from the educational program. Examples of harassment that could create a hostile environment follow.

Several students continually remark out loud to other students during class that a student with dyslexia is "retarded" or "deaf and dumb" and does not belong in the class; as a result, the harassed student has difficulty doing work in class and her grades decline.

A student repeatedly places classroom furniture or other objects in the path of classmates who use wheelchairs, impeding the classmates' ability to enter the classroom.

A teacher subjects a student to inappropriate physical restraint because of conduct related to his disability, with the result that the student tries to avoid school through increased absences.7

A school administrator repeatedly denies a student with a disability access to lunch, field trips, assemblies, and extracurricular activities as punishment for taking time off from school for required related to the student's disability.

A professor repeatedly belittles and criticizes a student with a disability for using accommodations in class, with the result that the student is so discouraged that she has great difficulty performing in class and learning.

Students continually taunt or belittle a student with mental retardation by mocking and intimidating him so he does not participate in class.

When disability harassment limits or denies a student's ability to participate in or benefit from an educational institution's programs or activities, the institution must respond effectively. Where the institution learns that disability harassment may have occurred, the institution must investigate the incident(s) promptly and respond appropriately.

Disability Harassment Also May Deny a Free Appropriate Public Education

Disability harassment that adversely affects an elementary or secondary student's education may also be a denial of FAPE

How to File a Discrimination Complaint with the Office for Civil Rights:

Discrimination on the basis of disability is prohibited by Section 504 of the Rehabilitation Act of 1973 and Title II of the Americans with Disabilities Act of 1990 (Title II prohibits discrimination on the basis of disability by public entities, whether or not they receive federal financial assistance).

A complaint may be filed by mail, by email (ocr@ed.gov), or by online complaint form:  http://www.ed.gov/about/offices/list/ocr/complaintintro.html

Remember the reciprocity principle:

Reciprocity principle: If a remark or an action or an attitude would be seen as discriminatory if directed toward a minority, it is discriminatory for us. We have exactly the same civil rights, even if the justice system does not act as if we do. - Introduction: Social Attitudes and the Disability Cohort