Introduction: Social Attitudes and the Disability Cohort

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

Stigma: Notes on the Management of Spoiled Identity - Erving Goffman

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

 Because of the sensitive nature of this weblog, it is published under a pen name: John M. Halberg. While the primary focus will be as the blog title suggests, this blog is about all of us who bear stigma because we are physically different—little people (Google "dwarf tossing"), those we call retards, those we call spastics, those we label with the h-word, as the late Ms. Ivins does above, and others—who are, as her folksy phrase implies, pervasively targeted in our society. These pages are about the civil rights of this Disability Cohort. This weblog seeks to document the current "I don't care" climate of disability discrimination, and to propose solutions.

A Google search for "cleft palate blog" shows posts mainly about children, and advice to parents of children with this birth condition. These are valuable and needed, but there is an absence of material about the civil rights of these children when they grow up, about the current social attitudes towards those with clefts, and about the rest of the Disability Cohort. What follows are initial observations, interspersed with comments (treated as "anonymous" even when they aren't) found on other weblogs:

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?"

Anonymous - This is sweet i have a cleft lip and palate also and i had an amazing doctor i am 18 and not many people can tell i was born with it :) the only thing i would like to warn your is when he goes to school he may get made fun of cause i did a lot eventually it will stop once the kids mature but some remarks can be hurtful i was never angry abt being born with this i actually like being different in this way....my little brother has it and i am giving him advice all the time about the bullying espeacially.

Our society, in part with the aid of the Americans with Disabilities Act (ADA), is respectful with certain other types of disabilities. A couple years ago I used public transport in such European cities as Berlin, Budapest, Vienna, Munich, Paris, and Amsterdam. There was virtually no wheelchair accommodation. Characteristically, when I saw someone in a wheelchair, someone was along to help. Here, we wait patiently while a bus loads someone in a wheelchair (as decent people should). It is socially unacceptable to stare (again, as it should be). As with AIDS, an ethical public relations campaign has largely removed the stigma from these disabilities. It can be done.

The attitude revealed by the Time.com passage which begins this post endangers the mental health of the stigmatized disabled. A courageous artist, Sarah Marie Love, posted:

Being born and growing up with a deformity isn’t easy, as people can use this as an excuse to be a bully. Name calling was a huge problem for me at school, and this made me weary of those around me in all social issues. The most hurtful comment I received was whilst I was having dinner at my Secondary school. A very stupid boy in a year above me called me Bubba. He was a character in the film Forest Gump whose bottom lip stuck out far due to having “big gums.” I hated people commenting on the way I looked. As far as I am concerned it was no ones business and one day I wouldn’t have that intrusive lip, but reminding me of this didn’t take away the hurt I felt inside. Also, people (including adults) thought they had right to remind me every day that my lip stuck out. Walking past down the street or in the school corridor I would often see people pushing their lip out in a way to make fun of me.
When the new cleft unit opened at Guys Hospital I began to see the unit’s psychotherapist. I found her a great help, as I also suffered from General Anxiety Disorder and Obsessive Compulsive Disorder. It isn’t clear if dealing with the bullying and constant treatment was the course of my mental health problems, but I learned that research has showed that a higher percentage of children with harelip and cleft palate are more likely to than those who don’t. (Emphasis added.)

Some of the comments, including the following, are in response to Ms. Love's post:

Anonymous - Hi Sarah! Just read your amazing article on your life with a cleft lip and palate. You sound amazingly self confident and well adjusted and I am happy for you. My son was also born with a bilateral cleft lip and palate and is beautiful. He however despises the appearance of his lip which is protruding somewhat and his upper lip is scarred. He is an introvert and a very sensitive child. I wish him all the happiness and God"s blessings in life, but need help to build his self confidence and to equip him with tools to cope in the outside world. He seems to be scared to go to the "big" school and I am not sure whether I should hold him back for another year to protect him against bullies.
I t seems as if there will never be enough a mother can do to help a child who experience him/herself as different. What do you suggest?

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.

Anonymous - to Toetie. hi my name is Kiranmai but people call me Karen.. i was born with a cleft and lip pallet also. i am know 14 years old and going to turn 15 soon. this is my story. before when i was just lilttle kid i didn't think i was different or anything there some school who have kids that bully and there some that most r okay with. i wasn't bullied until i got to middle school. but there was little problems in 5th grade. i didn't relize i was born with this condition as soon i as began to grow up and i then notice mt face was different then other. no matter what you do even if u send ur son to school there is no chance that he will not get bullied. i am stilling being bullied i come home cry and sometimes my parents see and ask me y. everyone stares at me they all make fun of me once they look at my face they all say UHHGGG!!! theres no way to stop that.. i even feel like sucide. everyone child who is born with a condition like this or other that is part of out will be bullied. theres is no chance he will not. some day he has to face throuh but he will have nice friends who will care for him like i have they always say don't think of other they just dont get what im going throuh. best of luck for him. im about to get my surgery this dec. i will be 15 then.. so i hope u understood no matter if u held him back once he go bak he will still be the one to be stared and bullied..the teachers and concerls just gives the kids warning but sometime their there to help but most of all year there not.

The Google search site:ada.gov civil rights turns up references referring to the act as a civil rights act (and you will also find "affirmative action" on ada.gov). The ADA is no such thing. The ADA has done good work concerning accommodations for the disabled in the workplace and in public transit; but neither it, nor any other element of our decent society has done anything about defamatory remarks (again, note the passage from a national magazine which begins this post), or about the inescapable climate of discrimination. Just look at the anguish in the above comments.

Anonymous - hi sarah. i read your article. I have a cleft lip palate, sometimes it feels torture for the rest of my life. but life must go on. :) even i've undergone 3major operations still have speech problem. :) but its okey.. i love my life now. well i should. :) i will link u on my blog hope ull do the same. thanks sarah. :)

I'll conclude with quotes from Courts and the Civil Rights of the Disabled (also cited above):

In this context, note a recent news item:

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. ...

"I think when we look at cases, there's case law out there regarding people commenting and gesturing against race and religion. But when there's nothing out there regarding disabilities, it took me a little bit longer to come to a decision." ...

As for whether this case presents a new precedent in Ohio is another debate.

"I don't know if it sets a precedent so much maybe as it begins a conversation between people," said [Jennifer] Fitzsimmons [the chief assistant city prosecutor for this case]. "I think conversation starts progress, and I think if it can bring something else to light, it would be good." ...

We have had a civil rights revolution, embodied in the Omnibus Civil Rights Act of 1964. But note what Prosecutor Fitzsimmons said about the treatment of a little girl with cerebral palsy just a day or two ago: There's case law out there regarding people commenting and gesturing against race and religion. But ... there's nothing out there regarding disabilities. The Civil Rights Act has made such "commenting and gesturing" unacceptable when it applies to those we call minorities, that is, those of a different race or ethnicity.

However, we have a double standard concerning discrimination against the disabled. We treat them as having stigma. ...

Above, we saw that William Bailey publicly humiliated a defenseless little girl, because she has cerebral palsy. He felt safe in doing so, with reason: This sort of thing happens all the time. After all, the nation's premiere news magazine defamed another group of disabled people, in print, and the nation has tacitly accepted this. It is as if, for the disabled, the civil rights revolution never happened.

How can this be? After all, justice–in this case, the freedom from marginalization and disenfranchisement–is, by definition, universal. As Martin Luther King said, "injustice anywhere is a threat to justice everywhere."

Perhaps the reason is that our civil rights revolution apparently was not implemented, as King thought it would be, as justice–which is universal–but as protected class, which is obviously not universal. (King did not dream that his children would be in a protected class. He said I have a dream that my four little children will one day live in a nation where they will not be judged by the color of their skin but by the content of their character.) We–even the infamous William Bailey–know that there are certain kinds of things you don't say about those we call "minorities." That sense–can we call it a sense of right and wrong?–obviously did not kick in where a little girl with cerebral palsy was concerned, and it did not kick in in the case of Molly Ivins' supposed earthy humor regarding a birth defect. ...

In Plessy v. Ferguson, the first Justice Harlan wrote:

Our Constitution is color-blind and neither knows nor tolerates classes among citizens.  In respect of civil rights, all citizens are equal before the law. The humblest is the peer of the most powerful. The law regards man as man and takes no account of his surroundings or of his color when his civil rights as guaranteed by the supreme law of the land are involved.

Yet we have among us people we see every day, who are members of a targeted minority, but are not, as Prosecutor Fitzsimmons' comment reveals, in a protected class (there do not seem to be civil rights cases regarding them). That should not make a difference in how we treat the disabled. But it does: The most horrifying aspect of Molly Ivins' offhand remark is that everybody understands it. If it was possible to "harelip" the governor, it is understood that person would be outside the protections and considerations we afford those of "normal" identity.