Devaluing People with Disabilities

Hi, welcome back!

In my last post, I mentioned that I was going to discuss the means by which people with disabilities have historically been devalued by the very society they live in in spite of political rhetoric embodied in the Americans with Disabilities Act, the Individuals with Disabilities Edufcation Act, the Fair Housing Act and related enabling legislation with a national scope, and the United Nations Convention on the Dignity and Rights of People with Disabilitie on the international arena, all mandating equal access to participation in every sector of society and the right to lead a fully complete life comparable to able-bodied peers. These are all ideals to aspire towards but unfortunately they are honored in the breach or more often, simply not acknowledged by those charged to enforce them. The reality does not match the political rhetoric. Let me give you an idea of what I'm talking about.

1) The unemployment rate nationally for people with disabilities this month is 16%. Contrast that with a 7% for those without disabilities. I'm not absolutely certain about the exact figure but you get the idea that the gap is a significant one.

2) Access to transportation options in NYC is abysmal. Only 10% of the entire taxi fleet is wheelchair accessible at thuds point. This means interminably long waits on the streets before a single accessible cab is available . The Mayor and City Council President refuse toacknowlegde the problem as a civil rights issue requiring access to the mainstream. Disability advocates are fighting hard to redress this huge imbalance, working towards the goal of 100% accessibility comparable to the checker cab fleet in London. Accessible prototypes and a few innovative minivans were presented to the NYC Taxi and Limoisine Commission which ultimately decided to purchase inaccessible minivans for it's fleet, completely disregarding the needs of the disability community! Therefore, a person in wheelchair or scooter forced to use either paratransit vans(often unreliable and highly inflexible, requiring a day's reservation in advance) or public transportation utilizing fixed routes unilaterally cut by the Metropolitan Transit Authority as part of austerity measures a few months ago.

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Letter of Hate - Example of Devaluation of People with Disabilities

An absolutely shocking and hateful letter from an anonymous neighbor in Ontario Canada was posted as a handbill, targeting an innocent child who just happened to have autism, a developmental disability, went viral on the Internet last week. It was full of invective and strongly urged the family to put away the child "forever " claiming that his loud vocalizations, idiosyncratic behaviors and even his very presence "disturbed" the author of the missive and by extension the very community that family resides in. Upon investigation, the local police deemed that the letter although malicious in intent and deed "did not legally rise to the level of a hate crime" because a class group was not targeted. Such sentiment is indicative of society's systemic and often subtle devaluation of people with disabilities within which the child(nameless) is a member of by virtue of his cognitive dysfunction. This is a clear instance where although accessibility and equality regulations are on the books and often are mandated in various codes, one cannot legislate attitudes and bias against an often disenfranchised minority group. The incident should be taken seriously by Canadian society because if other similar occurrences surface unacknowledged, a eugenic frame of mind could easily resurface even within a democratic society. I truly hope that it is an isolated incident but make no mistake: vigilance by both the community and by human rights authorities must not lag.

Twin Atttacks on Disability Rights - National & International

It seems that during the last week or so, the hard-won dignity and enabling laws, both national and international, are under attack by Industry and conservative-backed lobbying interests seeking to unravel the political gains achieved by the disability community. The battle is being fought in The storied chambers and the weapons used are legislative statutes and proposed amendments that weaken or nullify existing laws through exceptions. For example, the American Hotel Association, an industry organization, stridently opposed the public accommodation requirement of the Americans with Disabilities Act, enforced by the US Department of Justice mandating that permanent modifications to existing pools or pools under construction be modified to facilitate easy access for patrons with disabilities, claiming a myriad of excused including that the presence of swimmers with disabilities are "unsanitary", among other flimsy excuses for noncompliance. This at at time when hotel visitors are climbing to record numbers! The problem is if such an exemption is codified, it might create a domino effect in which other provisions in the ADA would be nullified or compromised. The Disability community CAN NOT afford that risk.

A second issue being considered by the Senate Foreign Relations Committee is whether to ratify the United Nations Convention on the Rights of People with Disabilities, an Obama-backed measure. The CRPD, which embodies the basic rights and dignity of persons with disabilities worldwide, has been embraced by almost every member of the United Nations General Assembly with the US as one of the few that has not ratified it. The action is being opposed by right-wing lobbying groups such as the Home School Legal Defense Association which is against mandated intrusion into the family unit, a libertarian perspective. The irony is that the CRDP was developed on the ADA framework and actually expands on it with additional mandates.

OWS, Disability & Power Dynamics,

Here are my personal reflections on the exponential growth of the Occupy Wall Street movement and the role the disability rights movement can and should play in it. OWS has developed into a global phenomenon very quickly that provides a platform for the 99% of the wealth distribution. The members of the middle class and poor members of society are given a platform to express their rage, discontent and frustration over numerous injustices perpetuated by governing forces and the elite(1%) of their societies. Many of the inequities such as exorbitant bank fees, arrogant concentrations of power and income among the few echelons in power, are valid concerns and rightfully should be rectified through the political process of creating a coherent political agenda.

A number of disability activists, many of whom are personal friends of mine, are actively participating in the protests in an around Zuccotti Park and the financial epicenter, Wall Street itself on a weekly basis manning the barricades with protest signs highlighting systemic policy inequities fostered by society at large and especially by entities that subscribe to the medical, stigmatizing model of disability. What I find interesting and disconcerting is that every disenfranchised and minority group is represented and recognized by the governing body of the New York City OWS, the NYC General Assembly with one glaring exception: disability group is not mentioned in the NYCGA mega site (wwww.NYCGA.org) at all! It means that this group, 40 million strong nationwide is not acknowledged as a viable force to contend with. Such neglect is in line with historical trends where disability had traditionally been devalued by society at large, a residue of the eugenics era of the 19th and first half of the 20th century. Issues of great concern to the disability community are: access to employment opportunities (& adequate preparation for them through education)' health care coverage for well being and personal assistant services, affordable and accessible housing built according to universal design (disability-friendly) codes, utilizing public transportation modded such as subways and taxis, to cite a few of many issues. Key landmark legislation since the 1970s were passed creating unprecedented opportunities for many people with disabilities but relatively few were were able to take maximum advantage of them while the majority of them were either placed in custodial institutions or restricted within the confined of their home environments. Many battles were and continue to be fought by the grass roots disability rights movement. There have been successes and reversals with each succeeding generation.i believe that the experiences of the disability community is highly relevant to the Occupy Wall Street democratic force. Strategies a can be shared and the nascent anger can be shaped into a specific political agenda such as taxing the 1% to fund essential social services, will benefit all. Including a disability group in the NYCGA system is an excellent start in acknowledging our potential contributions to the cause long overdue. The late disability historian Paul K. Longmore and activist Frieda Zames would have agreed with this.

Postscript to Hurrcane Irene and Failure in Emergency Disability Planning

Hi Again:

In my last post, I described my individual experiences and the unmistakeable reality that while experiencing the devastating onslaught of Hurricane Irene at the end of August, there were literally no other viable option left but to remain in my apartment after being alerted to the fact that no accessible accommodations were available for people with disabilities under the auspices of the New York City's Office of Emergency Management within the Bloomberg administration.

According to the latest Facebook posting by Susan Dooha, Executive Director of CIDNY(Center for Independence of the Disabled in New York - an advocacy agency:

"Major disasters in New York City such as the September 11th terrorist attack and more recently Hurricane Irene, have shown that the city is not prepared to meet the needs of people with disabilities during disasters. A lawsuit filed today in Federal District Court alleges that the City of New York discriminates against men, women, and children with disabilities by failing to include their unique needs in emergency planning."

This means that by virtue of pure negligence, the federally-run agency within the city boundaries failed to include its citizens with disabilities in the planning and implementation process therefore violating the equal access provisions of the Americans with Disabilities Act. It also put that segment of the population at a greater than chance probability of health risks or injury that's disaster- related. Simply making it mandatory that a person with a disability be accompanied by a hired personal assistant as a precondition for acceptance into an emergency shelter is not sufficient to address the need for adequate temporary shelter. There are usually extenuating circumstances pertinent to each individual with a disability.

Unless these factors are taken into account and facilitated through honest and thorough communication between OEM and the disability community, such missteps are bound o occur. Let's hope and trust it does not happen again the next time a disaster strikes.

My Dalliance with Irene - a Failure in Emergency Disability Planning

Hi Again!

In this post, I relate my experiences as an individual with a disability who uses a wheelchair, manual or powered, when Hurricane Irene hit New York City with a ferocious vengeance. I reside in the Kips Bay/Murray Hill section section of the city,g roughly 3 blocks from the East River, near the vulnerable, low-lying areas classified as "Zone A" by NYC Office of Emergency Management (OEM) in an eighth floor apartment with an elevator. The issue was whether to remain in my apartment to ride out the storm or to seek local designated emergency shelter in this instance, Baruch College. On the morning of August 28th, Sunday, we were waiting for Mayor Michael Bloomberg to issue a mandatory evacuation order. At that point, I noted Facebook post by Susan Dooha, the executive director of the Center for Independence of the Disabled of New York, known by its acronym, CIDNY, a seasoned advocacy agency, stating that emergency shelters run by OEM were inaccessible for people with disabilities, particularly those using wheelchairs and/or were run by volunteers poorly trained to accommodate such need. Reading this item made me realize that it was best remain in the apartment and that was an attitude of benign neglect within the Bloomberg administration when it comes to emergency disability planning for such and other contingencies. Bloomberg himself compounded the situation with a major gaffe: he urged citizens to take taxis to nearest shelters without mentioning the needs of citizens with disabilities. If one needed further proof of the systemic devaluation of people with disabilities, this is it! If they were valued, emergent planning for his sector of the population would have been factored in from the beginning. There needs to be greater depth of communication between OEM and the disability community from here on so that this chaotic situation would not repeat itself.

Evidence of Devaluation of Disability by Society

Hi there!

Increasingly, in light of increasing economic pressure to pass stricter austerity measures at every level of society from the national scene down to the community arena and even in interpersonal exchange, perceptions of people with disabilities are being altered - and not in a good way either. For example, in New York State where I reside, tin the effort to curb Medicaid expenditures Governor Andrew Cuomo empaneled a Reform Commission to find ways to realize huge savings. Among the recommendations that are presently being enacted is to shift control of home care from the traditional Human Resources Administration to a new bureaucratic entity called the Medicaid Managed Long Term Care Program which itself is grounded on the medical end business paradigm. This structure has the potential to negatively impact on the daily lives of people with disabilities like myself who use Consumer Directed Personal Assistant Program which enable us to live productive, independent lives by autonomous control over the duties and responsibilities of the personal assistant being utilized by the consumer with a disability. The real danger is that in the name of savings physician mandated hours of coverage will be cut severely to the point that the very quality of personal care will be compromised to the point that the consumer will have virtually no choice but to become institutionalized, an extremely expensive and will- sapping proposition. Those with severe disabilities will face a greater prospect of dying sooner than the average life expectancy simply because the quality of essential care is nonexistent. In addition, under the managed care framework, the autonomy of the consumer to hire and fire aides for good cause will be whittled away and replaced by bureaucrats who assume " custodial" care of us and have virtually no conception of the daily needs of the individual person with a disability. It is as if the presence f an impairment denotes incompetence in making daily decision even when evidence exist that there is a history of highly successful experiences. As a matter of fact Consumer Directed Personal Assistant Programs have been proven to cost at least a third of what is required to maintain the patient in a nursing facility precisely because it is situated in the home and therefore within the community. The accrued savings would add up to millions of dollars with the emphasis of community- based living with ancillary support systems in place. This is a classic instance in which stereotypic perception of people with disabilities informs the policy directives,usually controlled by the medical establishment. It harkens a return to the eugenic movements of the 19th century where the social Darwinist ethos of survival of the fittest predominated and those who either by birth or happenstance fell short of the ideal embodied norm faced moral and social opibrium.