Abuse: Sanctioning Societal Violence
Long time disability scholar Professor David Pfeiffer stated (in a New Political Science review of Beyond Ramps) that he "ha[s] never met a former inmate of a state school or a state hospital who was not repeatedly raped, men and women."
Disabled persons in the movement are tuned-in to such eye opening reality but the general public is under the illusion (and perhaps would prefer to believe) that these institutions that warehouse disabled persons really take "care" of "them. For the disbelievers, Pfeiffer's observation has recently been backed up by studies that show disabled persons are the most likely group to be victims of serious crime. Dan Sorensen, reporting in the TASH newsletter (March 2000), concluded that research consistently finds that people with substantial disabilities are targets of violent and other major crime at rates four to ten times higher than that of the general population. Estimates are that around 5 million disabled people are victims of serious crime annually in the United States.
-> Sexual abuse rates of disabled men and women are significantly higher than in the general population. Research shows, through structured interviews of 27 women and men with mild mental retardation in four San Francisco Bay Area counties, that just under 80% of the women and 54% of the men had been sexually abused at least one time. These rates compare to 13% of women in the general population who have been victims of at least one rape in their lifetimes.
-> Sorensen estimated that in California only 4.5% of these crimes are actually reported to authorities, compared to an average 44% report rate for the general population. Several studies suggest that 80 - 85% of criminal abuse of residents in institutions is never reported to authorities. Evidence also shows that when these crimes are reported, there are lower rates of police follow-up, prosecution, and convictions.
-> A major epidemiological study of 40,000 children in Omaha schools from 1995 to 1996 found that children with disabilities suffered a rate of abuse 3.44 times greater than children without disabilities, and children with behavior disorders suffered a relative rate of physical abuse 7.3 times that of non-disabled children. The relative rates for sexual assault was 5.5 times greater, for neglect 6.7 times higher, and for emotional abuse 7 times higher. These findings are consistent with other studies that uncover that children and adults with psychiatric disabilities suffer some of the highest rates of crime and criminal abuse among the disabled population.
-> Dick Sobsey (Canada) is studying homicides against people with developmental disabilities and is finding a pattern of sentencing discrimination with these murderers getting substantially lesser sentences. Several studies report very high rates (8.5 to over 20 times higher) of violent crime against people with psychiatric disabilities.
The Sorensen report made this year's Project Censored's Top 25 most censored stories. Sorensen says "I know of only three significant stories on this issue over the last ten years. Most reports describe isolated crimes with no hint that there is a large, serious, and persistent pattern of violence directed against people with disabilities."
Institutional abuse can carry a life long sentence for the target of abuse. Such was the case of James Levier of Scarborough, Maine, a 60 year old deaf man who had publicly testified that he had been sexually and physically abused at the Governor Baxter School for the Deaf . Levier was among a group of people seeking compensation from the state to make up for the abuse at the state school. A 1982 inquiry by the state Attorney General's Office confirmed that abuse had occurred there.
Then last year, Levier testified before state legislators that he was abused when he attended state-run schools for the deaf in Portland and Falmouth between 1949 and 1957. The combined abuse, he said, contributed to lifelong depression, suicidal urges and violent outbursts. The last outburst was when Levier took a rifle to a shopping parking lot and wound up being shot to death by police in a confrontation. His white minivan had writing on the side that suggested Levier was planning to die for his beliefs regarding mistreatment of deaf persons.
What was Levier up against? A spokesman for the state Department of Education said at a legislative hearing that there was no money in the governor's new budget to compensate victims of abuse and the spokesman also questioned the appropriateness of a public apology, saying the state was only at fault in some cases of abuse. In a typical pass the buck strategy, the state would not even apologize for its acknowledged part in failing to provide adequate protection to deaf children.
Disabled persons should not be thought of as victims who have resigned themselves to abuse. We have been working to change policies that make disabled persons such easy targets for abuse. It is a tough uphill battle given the vested interests - those organizations, businesses and persons who have established an advantageous relationship to income from these institutions, that keeps the money going to them rather than someone else such as the disabled individual.
Historically disabled persons have been segregated from the rest of society into state and private institutions, homes for the deaf and for the "incurables," in for profit nursing homes and group homes. All of these institutions have a stake in keeping disabled bodes in their facilities to keep the money coming in and they have proved to be resistant to reform that would give disabled persons the freedom to choose where they want to live and with whom. These institutions are more beneficial for their owners and the hierarchies of professionals who work for them than for disabled persons who are forced to be there.
Systemic institutionalization makes much of the abuse of disabled persons possible by imposing powerlessness on the "victims" of abuse. If policies (and public money) are directed to institutionalize those who may need assistance with daily living what can a disabled inmate (at the bottom of the hierarchy) possibly do within the confines of a nursing home wall to stop it? Fire the offending staff person? So disabled persons have collectively organized to make community care a policy option to alter this reality. Dick Sobsey who has studied such abuse for years believes that home based services promise a less fertile climate for abuse. Under the Micassa bill which Tom Harkin has introduced to Congress, Medicaid would provide an in home services alternative. The money would follow the individual and the individual would choose where to live. Some states have such programs, some states underfund them so there are impossibly long waiting lists for community-based services.
Collective organization is key to overriding the powerful vested interests but so is developing control over reforms aimed at remedying the problem but only scratch the surface. For example, the Leben "Home" on 45th Avenue in Elmhurst, a for-profit board and care facility for people designated as "mentally ill," was supposed to be a positive community alternative to the psychiatric hospital setting. Leben, however, is a "brick building with a barbed wire perimeter on 45th Avenue in Elmhurst" according to the New York Times "a place annually deemed by the state as acceptable quarters for 360 people with mental illness, some of whom can routinely be spotted panhandling on surrounding streets or picking through the garbage of the nearby Continental Diner." ("Inquiry Finds Mentally Ill Patients Endured 'Assembly Line' Surgery," March 18, 2001)
Over the years Leben has amassed a record of neglect and misconduct. Last year, the state forced the "home" to evacuate its first floor described as "a warren of crumbling walls and fetid mattresses where 60 people lived before they were led out into the daylight, some clutching belongings in black trash bags." (NYT) A few years earlier, the home overlooked the disappearance of a resident. Seven months later, his family learned that he had been run over by a Long Island Rail Road train well before the home reported him missing, and had been buried, unmourned and anonymous. A resident was raped at the home by a janitor in 1995 and two residents were killed, their culprits never found, in 1989. In 1993 a decomposed body was discovered wedged behind a freezer.
The state pays the home's operator, Jacob Rubin, $3 million a year to operate this "home." Since 1992 Rubin has been accused in lawsuits of misappropriating thousands of dollars from residents, of trying to withhold psychiatric treatment from residents, and of playing a role in a 1998 scheme that got 24 residents to consent to what state officials called "assembly line" and often unnecessary prostate surgery.
Yet the state of New York has not closed Leben down or found an appropriate safe setting for the residents who live there. Leben remains the largest for-profit home for mentally ill persons in New York but some organizations believe the Leben situation is the tip of the iceberg for the adult group home industry. Clarence J. Sundram, a former chairman of the Quality of Care Commission told the NYT that "[the state] has had a history of completely ineffective regulation of this industry."
Indeed the state has increasingly proven its capitulation to the interests of business and other institutions in many arenas where it needs to be protecting citizens and enforcing the law. Disabled persons, for instance, found it necessary to file a class action lawsuit against the Washington D.C. housing authority for violating federal law. The suit against the D. C. Housing Authority was filed on behalf of disabled people who are denied accessible public housing in violation Rehabilitation Act of the 1973. Two accusations against the state are that disabled children must crawl up stairs to reach bathrooms, and young men are forced into nursing homes because D. C. has failed to comply with federal housing laws. This failure of government works very well for the nursing homes and other institutions who have more captive bodies to house and to charge the government $40,000 - $80,000 per bed per year.
There are too many instances of abuse and violence to list in this commentary but here are a couple more to think about.
Disabled persons are routinely segregated from paid employment (approximately two thirds of the working age disabled population is unemployed). Disabled persons are coerced out of the workforce (much as nondisabled workers are coerced into it) and onto at or below poverty benefits to the benefit of the capitalists. The disability benefit system thus serves as a socially legitimized means by which the capitalist class can avoid hiring or retaining non-standard workers and can 'morally' shift the cost of supporting them onto poverty-based government programs -- thereby perpetuating their poverty. Unemployed disabled persons are not being "taken care of" as society might like to believe. Deaf activist Richard Roehm, for instance, recently wrote:
"Here in Orange County,California, we have scores of people with disabilities having to choose between paying for rent or buying food. In addition to our advocacy facet, we'll be helping people with disabilities get the same access to proper nutrition as everyone else... Starting next summer we'll be running food drives to help these people with disabilities."
To quote Ghandi, "poverty is the worst form of violence." It is hard to know which is worse, poverty or the commodification of every aspect of disabled life under capitalism. Last year, for instance, Healthfield Home Health Corporation that provides David Jayne (who is a quadriplegic) with in home assistance terminated Jayne from Medicare services because he had dared to go out into the world and was no longer considered "homebound." Jayne had left home to watch a football game and the in home assistant told her boss at the corporation.
Healthfield had been sending an attendant to Jayne's home since 1997 to help him get out of bed and take a shower.
Healthfield CEO Tony Strange told the Atlanta Journal-Constitution that "Knowingly providing services to a patient not considered "homebound" could cost his company reimbursements or even contracts with the government."
The Medicare rule does need to be changed and a coalition has been formed to do so (see http://www.amendhomeboundpolicy.homestead.com/) but Jayne upon becoming a quadriplegic also became a commodity, a disabled body used to generate profits for this corporation. Nearly half of Healthfield's $65 million in annual billings comes from Medicare.
"I'm not willing to gamble that maybe [Medicare] won't deem them as appropriate care," said Strange. "I could wake up in January and not be a $65 million company; instead be a $35 million company." ("Home Not Always Where Heart Is Paralyzed Patient's Activity Cancels His Health Care," The Atlanta Journal-Constitution, December 2, 2000).
The corporation made a business decision - it divorced itself from Jayne's situation. It terminated him without considering what that might do to Jayne's life. In fact, last year Healthfield tried to terminate Jayne's service after he went to the funeral of a friend who had died from ALS. The agency backed off after being contacted by Bob Raubach, a lawyer from the Georgia Advocacy Office. This agency founded to protect disabled people is helping Jayne appeal the decision this time.
Raubach said the issue is recurring. "Some [home health care] agencies are afraid of being reimbursed by Medicare," he said. "But more so, they want to get rid of patients who are difficult, who are not as profitable."
Since neoliberal government is determined to contract services to for profit businesses --which are going to treat disabled persons like commodities -- the calculus of the vested interest is dominate. The market is not the solution.
The majority population may believe it is because of our physical or mental conditions that we become despondent and, so thinking, society is all too ready to grant our "right to die". But it is the abuse reported here and inexcusable treatment which is hard to endure. Society, by allowing these abuses to go on, is really sanctioning them -- perpetuating an unrecognized systemic violence against disabled persons.