Bitterness: A Flawed Concept

In recent months I have noted an increase in the number of people that deem me bitter. People with a disability and people without a disability have levied this charge. I find this extremely frustrating and proof positive I have failed. My words, often pointed, have been misunderstood. This failure is particularly troublesome because it has been consistent; thus I have consistently failed to make myself clear. I was up late last night thinking about why; why have I been characterized as bitter? It is the last word that I would use to describe myself. I am extremely content with my life. I am content with my aging body. Life, I am happy to report, is good. Almost too good in fact. So as I puttered around my house I did what I often do when perplexed. I reorganized my books and came to the conclusion the charge I am bitter rests upon two important variables. First a simplistic understanding of disability and secondly the utter failure to consider disability rights to be equivalent to civil rights.  

The above small epiphany came to me when I came across Simi Linton's important book Claiming Disability. I know Linton's work well but it was the foreward to her book by Michael Berube that hit home last night. Berube Wrote:  "If disability is not understood in terms of complex, overdetermined and sometimes tenuous relations to identity, it will not be sufficiently incorporated into the curriculum of the liberal arts or into the definition of what constitutes the “humanities”. And if we do not imagine “disability” as a broad general subject that shapes the humanities, it is all the less likely that we will manage to imagine disability as a broad, general subject that shapes public life and public policy."   The key words here are "shapes public life and public policy."  Disability does not exist in splendid social isolation. Disability is about much more than a given physical or cognitive deficit. Disability is not about a personal reaction to a disease or impairment. Disability is a social problem--an observation I have made many times. But this is not what the public at large sees. The public's understanding of disability is too often based on ignorance, assumed or unrecognized bias, and discriminatory social policies. We people with a disability are too often out of sight and out of mind. Our physical and social environment is not constructed to be inclusive. Yes, lip service is paid to the ADA and it is begrudgingly followed. In reality, few people without a disability give a damn about the disabled. Our lives are not valued. Our existence is deemed a costly burden (think Peter Singer). Add in a healthy dose of fear, we are the only minority group one can join in an instant, and the social reaction to the presence  of a person with a disability is too often toxic. This skewed social response is called ableism, a concept I am very familiar with. Ableism, as described on the blog Bastard: Musing of Yet Another Bitter Cripple, is "the set of social practices that I am met with when I venture outside the door of my home. It is not something most people would admit they adhere to, it is much more subtle than that. I am automatically met with a number of assumptions – very often unconscious ones – that lead to me being treated in a way different from everyone else. And the kicker here is that these assumptions are based both on my actual disability as well as presumptions about my disability that only live in their head. See: http://disabilityrightsbastard.wordpress.com/2013/04/23/ableism-and-internalized-ableism/ 

The penchant to classify people with a disability as bitter has and will continue to be levied. Nothing will change until ableism is acknowledged to exist. As of today, this concept is virtually unknown. It is simply not taught. When I have tried to use the word people look at me with a puzzled expression. When I use the word ableism and see the veritable light bulb go off in the minds of others I will know the social revolution I have dreamed of has taken place. This leads me to my second and final point. Few people understand or frame disability in terms of civil rights. At times when I link disability rights and civil rights some people will roll their eyes and think this is political correctness run amuck. When I compare disability rights with racial intolerance or women's rights some people react angrily. More than once I have been told framing disability in a civil rights framework is "utter bull shit". It is very hard to find a constructive way to respond to such an emotional reaction. Again, last night I wondered why; Why do people have such a knee jerk reaction? It dawned on me we associate civil rights with classes or groups of people that share a common bond. That bond is called identity. As an anthropologist I know a lot about identity. It is a concept central to the field. I have written about identity in various posts over the last few years. In September 2011 in a post entitled Identity and Disability I wrote identity: 

is a powerful organizing presence in all cultures. When we think of identity, social structures that come to mind include ethnicity, nationalism, religion, sexuality, gender, etc. When we seek to protect a given culture or minority group the underlying belief is that people have identities and that their identity is a vital part of their concept of self. This is a given when it concerns religion, gender, nationality and sexuality to mention but a few types of identity. No one would accost a woman and ask would you like to be a man? No one would dare ask a black man if he ever wished he was white. In sharp contrast people, strangers, feel free to ask me if I wished I could be cured. The idea I consider disability to be part of my identity simply does not cross the mind of others—non disabled others. Disability for the vast majority of Americans is thought to be a medical or architectural problem—one that was solved a long time ago when the ADA was passed into law. This is dead wrong. Prejudice is alive and well. I experience it, as do all other people with a disability. 

The concepts I have discussed are as subtle as they are complex. It takes much thought and requires one to dismiss or disregard most if not all of what has been assumed or learned that pertains to the lives of people with a disability. Thus when I point out a given access failure or discuss the down side to feel good stories about disability I am quickly labeled bitter. When I question why an elevator has been broken for six months I am bitter. When I point out a bus with a broken lift cannot by law be put into service I am bitter. When I question why a school district transports every child with a disability to and from school in a single short bus I am bitter. When I point out my rights as a passenger on a plane or train violate federal law I am bitter. But really think about it. What am I bitter about? Not one thing. I do however feel one primal emotion: anger.  I do not rant and rave. I rarely lose my temper. I am exceedingly polite in fact. I use my anger in a calm and reasoned way. I often note that it has been over twenty years since the ADA was enacted and yet civil rights violations abound as do needless physical barriers. I think twenty-three years is more than enough time to correct the social and physical barriers that exist. This line of reasoning makes people very uncomfortable.  Instead of addressing the problem, either social or physical, it is far easier to rely on a knee jerk and antiquated notion of disability.  You are bitter. Your bitterness is the problem. Not verbalized is the belief equal access is a choice. A kindness. I am not grateful for the largesse of society and that I am literally biting the hand that feeds me. Um, sorry but no. I have the share the same civil rights of every bipedal or typical American. I am pointing out that various long standing federal laws are being broken. I can assure you bitterness does not figure into the equation.