Medical and societal bias against disabilities
Despite the advances of modern society, there is still societal bias against people with disabilities. The purpose of BIID-Info.org is not to decry human injustice, discrimination and other unfairness towards people with disabilities, however, it is important to understand this in order to realise society's reactions to people actively seeking to become disabled.
There are now laws in many countries to protect the rights of people with disabilities. The United States passed the Americans with Disabilities Act in 1990, yet over the 15 or so years since it has been active, legislators throughout the US have sought to cut back the rights. Sites such as ADA Watch or ACLU are full of "horror" stories. One doesn't have to search long on Google to find other sites discussing disability discrimination. The ACLU sites states:
"Despite ample evidence that the ADA is working, people with disabilities are still, far too often, treated as second class citizens, shunned and segregated by physical barriers and social stereotypes. They are discriminated against in employment, schools, and housing, robbed of their personal autonomy, sometimes even hidden away and forgotten by the larger society. Many people with disabilities continue to be excluded from the American dream."
It is a well known joke in the American disability rights movement that "in the 60's African American wanted to ride the front of the bus, but in the 2000's, people with disabilities would just like to get on the bus."
And the situation is similar in other countries. The United Kingdom also has an active disability rights community.
The expression "better dead than disabled" is used by many people on a regular basis (as a side-note, shouldn't it be refreshing to people with disabilities that we're saying better dead than able-bodied"?).
And people with disabilities are, arguably, one of only two minorities discriminated against by their own families, because of their minority status. The other group being GLBT (Gay, Lesbian, Bisexual, Transsexual). You won't see an African American child rejected by her mother because they are African American, yet children with disabilities are often rejected by their parents because of their disability.
I won't belabor the point. You can Google yourself with terms such as "disability discrimination".
So, society as a whole shuns people with disabilties still, even though the situation is slowly improving, or so they would have us believe.
What of the medical community? They are, after all, the people we need to convince that surgery is a viable treatment option for people who have Body Integrity Identity Disorder.
It is easy to extrapolate that if "society" has a bias against people with disabilities, the medical community, as a member of society, also has such a bias. But one might be tempted to doubt such a simple-minded extrapolation.
The thing is, over the years, studies have been conducted that show that such a bias exist. The views of people in the medical field about life with a disability drastically differs from the view of people with disabilities about life with a disability! The perceptions of issues such as "quality of life" are diametrically opposed in some cases. To whit, some statistics gathered by someone else:
- 86% of spinal cord injured high-level quadriplegics rated their quality of life as average or better than average. Only 17% of their ER doctors, nurses, and technicians thought they would have an average or better quality of life if they acquired quadriplegic (KA Gerhart et al., Annals of Emergency Medicine, 1994, vol. 23, 807-812).
- No differences were found between 190 physically disabled persons and 195 "able bodied" persons on ratings of life satisfaction, frustration with life or mood (P Cameron et al., Journal of Consulting and Clinical Psychology, 1973, vol. 41, 207- 214).
- The duration of disability was positively related with acceptance of disability in persons with spinal cord injury-related paralysis. Severity of disability was of no importance in accepting life with a disability (F Woodrich & JB Patterson, Journal of Rehabilitation, 1983, July-Sept., 26-30).
- 60% of paraplegics reported feelings more positively about themselves since becoming disabled (C Ray & J West, Paraplegia, 1984, vol. 22, 75-86).
- Interviews and tests administered to 133 persons with severe mobility disabilities revealed no differences between them and the nondisabled norm on psychosocial measures. In another study, no significant difference was found between persons with severe disabilities (requiring wheelchair use and daily personal assistance) and persons with no disabilities on quality of life measures (R Stensman, Scandinavian Journal of Rehabilitation Medicine, 1985, vol. 17, 87-99).
- In a study of life satisfaction of quadriplegics, fewer than a third of those who used ventilators expressed dissatisfaction with their lives. There is evidence that life satisfaction scores are higher in persons who have had more time to adjust to disability (JR Bach & MC Tilton, Archives of Physical Medicine and Rehabilitation, 1994, vol. 75, 626-632).
- Spinal cord injured rehabilitation patients were similar to the general population on self-ratings of depression, yet hospital staff consistently overestimated the patients’ level of depression (LA Cushman & MP Dijkers, Archives of Physical Medicine and Rehabilitation, 1990, vol. 71, 191-196.
- Three-quarters of persons with spinal cord injuries rated their quality of life as good or excellent. Amount of paralysis made no difference, but people who used ventilators rated their quality of life higher than those not needing ventilators (GG Whiteneck et al., Rocky Mountain Spinal Cord Injury System Report to the National Institute of Handicapped Research, 1985, 29-33.
- Elderly paralyzed veterans rated their quality of life higher than similarly aged men without disabilities (MG Eisenberg & CC Saltz, Paraplegia, 1991, vol. 29, 514-520).
In the face of such an obvious difference in perspective, can we reasonably expect medical professionals to come over to our point of view and agree that surgery is a viable treatment option?
How can we convince someone that getting a spinal cord transection is something that would make a positive change in our lives when they think it is a fate worse than death? How can we get through to people who think amputations are obscene and repugnant (see comments by Scottish Parliementary)?
Is our only option to wait until society, along with the medical community, changes their perception of disabilities? Or can we instead rely on the few people who are more open minded and understand things better? After all, people with Gender Identity Disorder faced a similar issue all these years ago(!) when they were fighting to make surgery a legal and viable treatment option for them.