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Wednesday, December 7, 2011

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.

Monday, September 26, 2011

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.

Friday, September 9, 2011

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.

Thursday, September 1, 2011

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.

Monday, August 22, 2011

Challenging Times for the Disability !community

Greetings¡
I've been thinking about the political landscape lately and it seems that the debt ceiling fallout and the consequent growing influence of rigid conservatives espousing extremist believes with Biblical overtones like Michele Bachmann, Sarah Palin and their more secular sympathizers and Ayn Rand acolytes like Paul Ryan, Ron Paul and his son Rand Paul, make for challenging times for the disability community. These extremists, using the debt ceiling agreement hammered between the Obama administration and the Republican-controlled House, as political cover,threatens to cut back or eliminate government entitlement programs such as Social Security, Medicaid/Medicare, EEOC, and other supports based on Keynesian economic principles. In addition, the very guiding vision of the Americans with Disabilities Act might be stripped of enforcement powers, rendering it a defanged paper lion when needed most. All these emerging trends which would become actuality should the conservative elements gain more influence in the coming elections in 2012, would eliminate fundamental protections that enhance the productivity of the disability community and further devalue it's members. It's a sobering scenario to contemplate nd for that reason the disability community and the country for that matter are at the crossroads with extremely high stakes hanging in the balance as never before.

Sunday, August 21, 2011

How Disabilty is Devalued in Society

Hi again!

In my last post, Zi examined the dissonance or discrepancy between the ideals embodied in enabling legislation such as the Americans with Disabilities Act and related legislation as opposed to the real world shortcomings an individual with a disability faces on a daily basis. The fact that such a disparity that promotes inequality between the larger able-bodied community and the smaller minority class of is citizens with disabilitie, as defined by discrete limitations, is a reflection of hoW that class of 43 million people nationally has consistently been devalued in fact even if it is not explicitly stated on a regular basis.

The origin of such practices, called ableist(defined as behaving in a manner or initiating policies that are not congruent with the specific needs of a person with a disability) even if unintentional, harks back to the 19th century and early 20th century during which the eugenics movement flourished as the pace of urban industrialization proceeded apiece. During that period embodied differences were stigmatized by society and plans were developed to create a distance between the functionally able who epitomized the ideal man and those with obvious limitations who fails to reach the arbitrarily set benchmark. Charitable organizations were established to take take care of those deemed to unable to fend for themselves in a society based on the survival of the fittest belief. These facilities attracted large donations from wealthy citizens largely as a means to salve the often guilty conscience of the donor and maintain the clients/patients in subservient docile positions, tugging at emotional heartstrings as much as telethons o today in this sophisticated age. The structure of special education of children with disabilities at it's root, is an example of eugenic thinking that persists in spite of the mainstreaming heroic espoused by its leaders. It is as if equality is enforced by fiat rather than through genuine camaraderie although friendships do emerge from such situations by happenstance and through mutual respect; but that is usually the exception which proves the rule. The name "special" in special education connotes a distancing orientation rather than an integrative one. It puts children with disabilities on a virtual pedestal by virtue of their embodies distinctiveness rather than seeing these same limitations as points along a continuum, a difference of degree. Rehabilitation of which special education is a part of, has traditionally subscribed to the medical model which tends to classify conditions and syndromes in terms of deficits, a negative "objective" connotation. It makes sense since the custodians and agents of the eugenics movement who ran institutions and facilities were largely members of the medical profession.

Have we as a nation made any progress towards equal access? Technologically, yes but when one considers prevailing belief, no. This is why people with dsabiliies as a class are often devalued. Take a tiny but telling example: I stayed overnight at a 4-star hotel that had a sole bedroom configured for total wheelchair access. However it happened to be the only venue in the entire building without Internet capability: devoid of wireless network access which are taken for granted by hotel guests. I left the next day with a promise from desk manager that the disparity would be rectified shortly. Go figure!

Tuesday, August 16, 2011

Reality & Rhetoric in the Disability Wold: Dissonance

Hi there! Today I'm examining the disconnect between the day to day reality experienced by people with disabilities and the public perception of the rights of people with disabilities which are codified in enabling legislations that are considered rhetoric in that they are ideals or final benchmarks to aspire towards. The ideals of equal access are codified in national enabling legislation such as the Americans with disabilities Act (employment, architectural barriers, transportation and recreation), Individuals with Disabilities Education Act(early intervention from birth to 5 years and free appropriate public education through the elementary and secondary grade levels in public and private schools), Fair Housing Act(nondiscriminatory rent practices), Sections 503 and 504 of the Rehabilitation Act of 1973 (colleges and universities that receive federal funding for their programs and its international counterpart the United Nattions Convention on the Dignity and Rights of People with Disabilities(all-encompassing universal declaration mandate mandating equality and comprehensive access atall levels In the community.

The reality remains that all these laws are by and large honored in the breach: rarely followed in the the spirit in which it was intended by the disabled community. For example, the unemployment rate for people with disabilities is twice the national average, public transportation options for travelers with disabilities are increasingly limited in NYC with less than 10% of the existing taxi fleet accessible to wheelchairs and scooters (a situation disability activists are fighting to rectify the disparity) with the complication that the Metropolitan Transit Authority recently eliminated about 15% of its fixed bus and subway routes forcing its riders to use paratransit vans(notoriously unreliable and highly inflexible, unable to modify reservations made the day before and manufacture of both power and manual standards used for mobility needs ar not held to stringent quality control standards as to the same degree as before with the consequence that frequent breakdowns occur on a regular basis. Loaners often are of inferior quality.

All these fact suggest that there isa systemic devaluing of people with disabilities that hark back to the eugenic era of the 19th century. I will explore it's roots in my next post.

To be continued...

Monday, August 15, 2011

Personal Introduction

Hi, my name is Dan Winchester. I have a wide variety of interests in many subjects and have some in-depth knowledge of some fields. I have a doctorate in developmental psychology from Ferauf Graduate School of Psychology within the Bronx campus of Albert Enstein College of Medicine, part of Yeshiva University In New York City. I was also born with a disability, cerebral palsy, a brain injury since birth which affects my coordination(can't use my hands so I'm using an iPad stylus held by my teeth to hit letters/numbers on keyboard and a mouthstick to use on a MacBook laptop), speech and hearing(use digital hearing aids in conjunction with lipreading skills to meet my interpersonal communication needs although I know only basic ASL or American Sign Language).

Living with these challenges in an ableist society for 58 years(look at least 15 years younger - don't ask me why) has made me acutely sensitive to the inequities experienced on a daily basis by those who are perceived by the mainstream of society to be qualitatively different from the "norm"(a statistical artifact with no basis in reality). There is a profound dissonance or disconnect between the political rhetoric that touts equality in every sphere of life for citizens with disabilities and the grim realities faced on a daily basis in which both overt and subtle forms of discrimination and prejudice prevail. Examples are legion and I will share some with you while examining its root causes. We are living in a pluralistic society in which everyone no matter his/her background or heritage, has the potential to contribute to the productivity and integrity of the country as a whole. The very existence of discriminatory practices belies this glowing picture of equality. In subsequent posts, I will highlight these cultural and social patterns of prejudice and demonstrate how they contribution to the tendency by authorities to devalue people with disabilities by eroding basic supportive services and degrading the quality of essential equipment such as wheelchairs, etc. that are crucial to enable people with disabilities, myself included, to lead vital independent lives.

See you next time!