Search This Blog

Saturday, October 13, 2012

David Cameron's Distasteful Political Rhetoric

David Cameron, Prime Minister of Britain, gave a speech a few days ago that reinforced why conservative politicians here and abroad are contemptible human beings.  Cameron is under fire by the opposition party and his speech on October 10 was important.  Like Sarah Palin and Rick Santorum, Cameron is a skilled at using his disabled child for political gain. During Cameron’s speech his eyes welled up with tears when he spoke about his son. On many videos of Cameron’s speech the camera moves to his wife Samantha who also had tears in her eyes. It was great political theatre. I should note here the Cameron’s eldest son was born with cerebral palsy and epilepsy. He died in 2009 when he was just six years old.  Camerson stated the highlight of his year was awarding a gold medal at the Paralympics. Cameron stated: “When I used to push my son Ivan around in his wheelchair, I always thought that some people saw the wheelchair, not the boy. Today, more people would see the boy and not the wheelchair—and that’s because of what happened here this summer”.  This is a great line and it had the desired affect. It was well crafted and supposedly deeply touching moment, proof positive Cameron really cares about people with a disability. Too bad the emotional ploy is devoid of reality. What Cameron is hoping people forget or simply will never realize is that last summer’s Paralympian heroes are today’s scroungers.

Disability rights activists were quick to respond to Cameron.  For instance, Richard Hawkes, Chief executive of SCOPE, stated Cameron was “right to recognize how the power of the Paralympics could have an impact on attitudes towards disabled people. But attitudes do not change over night and disabled people have been reporting a decline in attitudes towards them for some time”.  This polite reply will have little sway on a toxic social situation for people with a disability. What Hawkes needed to say with force is that hate crimes against people with a disability are at historic highs in Britain. The number of hate crimes against people with a disability in Britain went up 33% in 2011 according to the Association of Chief Police Officers. There is no question the significant increase in hate crimes is directly related to Cameron’s effort to slash the benefits people with a disability receive. In fact some have compared the social situation in Britain to Nazi Germany in the 1930s. Atos, the French company hired to evaluate whether people with a disability are able work, and Cameron have made it clear people with a disability that do not work are lazy scroungers. Anti disability rhetoric abounds. Do not take my word for it, read Sue Marsh work at Diary of a Benefit Scrounger.

Marsh was quoted in the Huffington Post, UK that “It’s so frustrating that this man can stand on stage and lie—downright lie- about protecting disabled people. We are faced with the biggest onslaught disabled people have ever faced”.  Marsh went so far as to call Cameron’s plans to cut benefits a form of “Compassionate Fascist Conservatism”.  See the link:

I hope voters in this country are paying attention. If Romney wins the presidential election he will wage a war on the poor, disabled, elderly and other vulnerable population groups. It will be a campaign of historic proportions and people will die. Too extreme a viewpoint? I think not as this is already taking place in Britain. The template has been created. Hate crimes do not exist in a social vacuum. People with a disability have cleverly been identified as scroungers—people looking for a government hand out. Of course legitimate people with a disability deserve benefits but not the scroungers too lazy to work. And who makes this determination? Atos, a company hired to evaluate a disabled person’s ability to work. Atos relies on a supposedly complex computer program and 15 minute interview to make their assessment. The explicit goal is to provide the justification to cut the benefits of people with a disability. It is what they have been paid millions to do.  Thus Cameron does not utter the word scrounger. He does not acknowledge the animosity and stigmatized identity people with a disability acquired—an unwanted identity he helped create. Cameron relies purely on emotion—he gives touching speeches, lets tears well up in his eyes and has a camera pan to his wife who is equally teary eyed. One and all are touched. This man cares! His son had a disability. He knows what disabled people are like. Meanwhile there is some person with a disability navigating the London streets; an average person going about their day.  There is no compassion for this individual as a passerby will scream “scrounger” at him or her. How bad is it for people with a disability? SCOPE reports that two thirds of people with a disability that contacted them reported being abused or demeaned, often by strangers.

Reading news accounts about the onslaught on disability rights and supports in Britain is depressing. For instance, yesterday I read the government plans to discontinue the Independent Living Fund, a supplement fund that enables 19,000 people with a disability to live independently. I just shook my head in wonder. How can anyone with or without a disability not realize how dangerous these cuts are? The odds are quite good that if you live long enough disability will become a major variable in one’s life. These cuts hurt not just people with a disability but all those that will acquire a disability. In short, it is in the best interests of bipedal people to support all those with a disability who receive some sort of benefit.  I implore people to ignore the emotional rhetoric espoused by politicians like Palin, Santorum, and Cameron. They use their disabled children as political props, something I find distasteful. Think logically, analytically.  Do not be tricked by conservatives who give emotional speeches that contradict policies that directly threaten the lives of the very people they exploit. 

Friday, October 12, 2012

A week ago I read a New York Times story that angered me--"Rolling Past a Line, Often Exploiting a Rule" published on October 3. Here is the link:

Apparently a new term has emerged when dealing with passengers in an airport terminal that request a wheelchair--"miracle flights". I have never heard this term but I have seen people who request a wheelchair and most likely do not need one. Some airports (not all) allow people with a disability, usually a wheelchair user, to go to the front of the security line. This supposedly great advantage does not happen every time I fly but it is not out of the norm. According to the New York Times:

In the modern airport experience, where the tedium of long lines, sudden delays and ever-more-invasive security checks is the norm, little can be done to avoid the frustrations increasingly endemic to travel. So it may be an expected, if uncomfortable, fact that some travelers appear to exploit perhaps the only remaining loophole to a breezy airport experience — the line-cutting privileges given to people who request airport wheelchairs, for which no proof of a disability is required.

I have not had a "breezy airport experience" in decades. The author of the article is very clear--not waiting on the security line is a significant perk. However, what the author utterly fails to mention is the downside to this policy to people like me who are paralyzed. There are no "miracles" for me. I am at the mercy of overworked, underpaid, and poorly trained employees. Thus when I read, "While wheelchair users face the same T.S.A. rigmarole as other passengers, their trip through security is often expedited," I was taken aback. I can assure you my passage through airport security has never been expedited. Never, as in not once. In fact I would estimate it takes me at minimum twice as long long to get through security. To state people with a disability are subject to the "same T.S.A. rigmarole" is grossly misleading. This is what I experience. I take off my shoes, belt, and personal items  and place them in a plastic container. I put my single small carry on bag and computer in separate containers. As I approach the entrance my items go through the xray machine. Here is where things goes awry. I approach a glass door between machines and catch the eye of a TSA agent. This person speaks very loudly telling me to wait. He then yells "male assist." I wait for anywhere from 5 minutes to 10 minutes for a"male assist" to appear. When this person ambles over he is often bored and disinterested. Once in a while the TSA agent is openly hostile, clearly I have ruined his day. I am asked "can you walk at all". I reply "no". Some TSA agents will then roll their eyes at this response. The TSA agent asks "do want to be patted down in a private room". I reply no. I am then escorted to an area where I am not within the flow of passenger traffic. I am also far away from my bag, wallet, phone, and computer--a perfect opportunity for my things to walk off (I have lost quite a few cell phone chargers this way and I would never dream of bringing my ipad with me). I am told to wait while the TSA agent walks off in search of gloves. He returns and explains I will be pat down. The pat down can be thorough, as in I am being arrested and searched for deadly weapons or cursory, as in this is a waste of time and energy. In recent months I am sure to fold the air valve under my cushion. Since last summer if the TSA sees this valve I am subjected to intense inspection by a supervisor. My entire body is frisked. Frisk complete I am then asked yet again can you stand. I reply no, more rolling of the eye--I am obviously a lazy shit in the estimation of the TSA. Once again the TSA agent walks away, comes back with a small pad to test for explosive residue. The small white pad is wiped all over my wheelcahir. Yet again the TSA agent walks away and returns. Total elapsed time--on a good day at non rush hour time at best 10 minutes. On a busy day, lets say Friday evening at 7PM when every miserably tired business man or woman wants to get home, it will take at least 30 minutes. When I am at last on my own, I go find my bags that have been left unattended and hope nothing has been stolen.

The above does not fall into the "expedited" category in my experience. Too bad the author did not consider the ramifications of people who lie about needing a wheelchair. The diversion of labor makes my experience as a paralyzed man all the more difficult.  Those hired to assist me on and off a plane assume I can walk. When it becomes clear I cannot walk--not even a little bit--they appear perplexed and hopelessly confused. The fact is airlines are hostile to people who use a wheelchair. In the post 9/11 era my expectations are exceedingly low. I want one thing from the airlines: to not be targeted for abuse. In other words I assume service will be subpar, airline employees over worked, stressed out, and miserable. I do not expect any food, a clean airplane or nice terminal. I simply want to get from point A to point B without being harassed.

Thursday, October 11, 2012

Rocking the Cradle: On Parenting and Disability

On September 27 the National Council on Disability released an important document: Rocking the Cradle: Ensuring the Rights of Parents with Disabilities and Their Children. I spent most of last night reading the report. Nothing I read was surprising to me because many of the barriers and blatant bias described in detail I experienced first hand. Here is the link:

The NCD Executive Summary states:

The goal of this report is to advance understanding and promote the rights of parents with disabilities and their children. The report provides a comprehensive review of the barriers and facilitators people with diverse disabilities—including intellectual and developmental, psychiatric, sensory, and physical disabilities—experience when exercising their fundamental right to create and maintain families, as well as persistent, systemic, and pervasive discrimination against parents with disabilities. The report analyzes how U.S. disability law and policy apply to parents with disabilities in the child welfare and family law systems, and the disparate treatment of parents with disabilities and their children. Examination of the impediments prospective parents with disabilities encounter when accessing assisted reproductive technologies or adopting provides further examples of the need for comprehensive protection of these rights.

The report detailed twenty finding and made many recommendations. Below are direct quotes from the report’s twenty findings.  

FINDING 1: There are few accurate and comprehensive sources of information on the prevalence of parents with disabilities.
FINDING 2: The child welfare system is ill-equipped to support parents with disabilities and their families, resulting in disproportionately high rates of involvement with child welfare services and devastatingly high rates of parents with disabilities losing their parental rights.
FINDING 3: Parents with disabilities who are engaged in custody or visitation disputes in the family law system regularly encounter discriminatory practices.
FINDING 4: Parents with disabilities who are involved in dependency or family proceedings regularly face evidence regarding their parental fitness that is developed using inappropriate and unadapted parenting assessments. Resources are lacking to provide adapted services and adaptive parenting equipment, and to teach adapted parenting techniques.
FINDING 5: Prospective adoptive parents with disabilities face significant barriers to adopting children, both domestically and internationally.
FINDING 6: People with disabilities face significant barriers to receiving assisted reproductive technologies (ART), despite its importance for many people with disabilities who want to procreate.
FINDING 7: Personal assistance services (PAS) are a crucial support for many people with disabilities but usually may not be used to assist them with their parenting activities.
FINDING 8: Parents with disabilities face significant barriers to obtaining accessible, affordable, and appropriate housing for their families.
FINDING 9: Many parents with disabilities face barriers to traveling with their families using paratransit services.
FINDING 10: Parents with disabilities have significantly less income and more frequently receive public benefits.
FINDING 11: People with disabilities, especially women, face significant barriers to receiving proper reproductive health care.
FINDING 12: Parents and prospective parents with disabilities face a significant lack of peer supports.
FINDING 13: Social service providers regularly overlook the parenting role of their consumers.
FINDING 14: Formal Individuals with Disabilities Education Act (IDEA) Part C Early Intervention (EI) programs and other non-Part C early intervention and prevention model programs are an appropriate service option for many children of parents with disabilities.
FINDING 15: Parents with disabilities involved in dependency or family law proceedings face significant barriers to retaining effective and affordable legal representation.
FINDING 16: Centers for Independent Living (CILs), with appropriate training, can provide services to parents with disabilities.
FINDING 17: Despite limited funding and little national attention given to parents with disabilities and their families, a number of programs and support services have begun to emerge across the nation; they must be replicated nationally to provide consistent capacity to support parents with disabilities and their children.
FINDING 18: The impact of disability on the integrity of American Indian/Alaskan Native (AI/AN) families has been utterly neglected by professionals in the fields of law, policy, and research.
FINDING 19: Federal legislation, similar to the Indian Child Welfare Act, must be enacted to address the systemically disparate treatment faced by parents with disabilities throughout the country.
FINDING 20: The United Nations Convention on the Rights of Persons with Disabilities (CRPD) reinforces the rights of people with disabilities to create and maintain families.

These finding are not exactly ground breaking but when listed together are a devastating reminder of the significant barriers people such as myself encounter when they want to start and maintain a family life. When I read the report last night I thought why did I not read about this in the news. I did a quick online search and found many groups support the NCD findings. All applaud the report and consider it an important document, among them The Council For Exceptional Children, Autistic Self Advocacy Network, Alaska Governor’s Council on Disabilities and Special Education, United Cerebral Palsy and multiple Independent Living Centers too numerous to mention. I am listing just a small fraction of the disability groups that praised the NCD report.

Conspicuous by its absence is a single major news outlet. Well, not really. One newspaper in the nation mentioned the report—the Sacramento Bee. The New York Times and Wall Street Journal did not even use the report as filler nor did a single newspaper in any major city in the country. The Huffington Post—not a word. It is as though the report was issued within the vacuum of space. Sadly, this does not surprise me one bit. My son and the ADA came into existence within two years of each other. As he has grew I saw how the ADA failed to gain any traction—that is the ADA was the law of the land but there was no social mandate to follow the law. This led my son to conclude at a young age no one cares. Why would he say this? Read the findings above. He and I experienced many of the above findings. Not all but many. So in the process of coming of age my son learned a lesson no father wants his child to learn—no one cares. As he grew older he would often say “Dad, the ADA is bull. Lip service is paid to the law. You and I are the only people that care”.  He was largely correct. Of course some people care but this out of the norm. In my experience most people will politely listen to others who state there is a need for wheelchair access or a lift on a school bus or an elevator or a ramp or a curb cut etc. Most will agree such access is the ideal. At some point however there will be an awkward pause or silence. Someone will mention a tight budget, another will bring up the words I have learned to dread—“reasonable accommodations”. When this happens I know access is a lost cause. And this, the complete lack of social demand for access, is what my son learned by the time he was in first grade. As I fell asleep last night, I thought not much has changed aside from the law, a law most Americans consider somehow different from other civil rights legislation.      

Tuesday, October 9, 2012

Mercy: Please Do Not Be Merciful

Sunday I read a dreadful story in the NY Daily News written by Wayne Coffey. The story in question, “Tender Mercy: A Horrific Football Injury, an Assisted Suicide and a Family Trying to Spare Others”, made my blood boil. Dreadful does not convey just how terrible the story by Coffey was. I have low expectations for tabloids such as the Daily News and even lower expectations for sports writers in general.  Coffey’s article was maudlin in the extreme and essentially an advertisement for a new book, Like Any Normal Day by Mark Kram. Coffey wrote that Kram’s book was “brilliant” and “heart wrenching”.  Coffey’s story and Kram’s book details the life and death of Buddy Miley, one of Jack Kevorkian’s victims in 1997.  Like most of the people Kevorkian killed, Buddy Miley was disabled and not terminally ill. What drove Buddy Miley to seek out the infamous Dr. Death? Miley had a spinal cord injury when he was in high-school. Coffey makes it clear such an injury is a fate worse than death. Coffey does not stop here—he goes on to make it quite clear Buddy Miley’s brother, Jim, is a heroic figure and their mother is a saint. Jim Miley is portrayed as a man who could keep a secret and help his brother die. 

Coffey’s article is filled with such gems as the following:

For almost a quarter of a century, Buddy had been imprisoned in a broken body, helpless in almost every way”.

Buddy also knew that brother Jimmy, the youngest of seven kids and more than six years his junior, was the one person he could count on to honor his wishes—and keep it a secret. And so begins a story of a brother’s bond, a families heart ache and Jim’s journey to an impossible intersection of life and death and the hopelessly complicated issues that surround them, all of which pivot on a single question: Is it an act of mercy or murder to help someone you love take his life?

It was such an act of devotion, Rosemarie Miley says, Can you imagine what Jimmy went through?

They all prayed for a miracle… It killed him [Buddy Miley] that his mother’s whole life revolved around caring for him as if he were a newborn”.

Buddy would often say I hope God gives me a heart attack tonight”.

From the day of the accident until 1997, Rosemarie was Buddy’s No. 1 care giver, changing him, feeding him, loving him”.

Clearly life after a paralyzing injury is nothing short of horrific. It destroys not just the life of the “victim”, Buddy, but derails the life of the entire family. Jim Miley’s baseball career was destroyed by poor choices and his overwhelming belief he needed to be with Buddy.  Buddy’s mother was called “Saint Rosemarie” by the family. Why was the mother a Saint? According to Jim Miley she “was the only one that never left. Others would say I’ve got to get out of here”.  
I find much of this story distressing. I do not find the family response inspiring or heart wrenching but rather inherently demeaning to Buddy. I do not doubt they loved Buddy and did what they thought was right. I do question the larger issues associated with Buddy Miley’s life and death. For instance, three years before Buddy Miley’s  assisted suicide Rosemarie Miley wrote to Sports Illustrated about her son Buddy in response to yet another spinal cord injury that occurred in an NFL game.  She wrote:

My son broke his neck 19 years ago playing high-school football. Since then our home has been hell on earth. The injury has altered the life of our family and the lives of our son’s friends. I am sure the majority of readers love football. I ask them to spend one day with my son.

When I read stories like this I shake my head in wonder. I am also transported back in time to those first rough years when I was first paralyzed. Those were hard times physically and mentally. But my parents were hard people—hard and loving. I was constantly told my mind worked and that is what makes us human. I was no different than any other person. I was going to be held to the exact same standards as my siblings. Not an ounce of sympathy was ever expressed.  I was the same person I was before I was paralyzed.  I could and should adapt.  Life moved on and do not dare feel sorry for myself.  All I got was unmitigated support from my family.

Given the above, I just do not understand families like the Miley’s. Deeply religious they took their son to a Pat Robertson crusade and Lourdes, France to visit the healing shrine. My folks were deeply religious too (heavy duty Catholics) but they never prayed for a miracle cure. This, they knew, was inherently demeaning. Prayer was a central component of my parents life but their beliefs were a private matter.  More to the point, why did Coffey not see what is obvious to me: paralysis is not the end of a so-called normal life. Well-established methods of adaptation exist. No one who is paralyzed should suffer. Sure being a quadriplegic creates a set of issues I have not had to adapt to. But quadriplegics, virtually all of them, learn to adapt and move on with life.  Again, I do not get it.  We have had decades to hone care for the human body after paralysis. It is not complicated. Anyone can adapt.

The most disturbing aspect of Coffey’s article and by extension the book by Kram is it sells the idea assisted suicide is and should be a legitimate option. I would ask an option for who?  Proponents of such legislation and groups such as Compassion and Choices, contend you should be able to control how and when you die.  Proponents claim multiple safe guards will be put in place. Assisted suicide will apply to only those with less than six months to live. All the safe guards in the world will not protect people like Buddy Miley. When a physician or beloved family members ends the life of a person like Buddy Miley or Daniel James and others with significant disabilities it will not be perceived as a criminal act. Instead such a death will be deemed an act of mercy; an expression of great self sacrifice and love. Jim Miley stated in the Coffey article “Even if I went to jail, that would not have changed anything. I would’ve done it. It’s what Buddy wanted. He was the quarterback and he called the plays. I just ran them”. Let me pose one final thought: what if Buddy Miley was not a quadriplegic. What if he was deeply depressed after a serious car accident and in the midst of an arduous recovery that would require many surgeries and a year or more of rehabilitation. Under these circumstances there is no way an assisted suicide would take place. To me, this is proof positive a double standard exists. As such I consider myself and other paralyzed people to be a class apart. This worries more than you can imagine.