One person who I can always count on for a sober assessment of the social and economic conditions people with a disability find themselves in is Joseph Shapiro. Author of Nothing About Us Without Us, Shapiro often makes astute points about the economic plight of people with a disability. When I was driving yesterday I heard Shapiro on NPR commenting about an ever present and worsening problem for people with a disability--employment or more accurately rampant unemployment.
In October the national unemployment rate hit 10.2% Economists and the mass media freaked out. The grim unemployment figures made headlines nation wide. The national news led off its programing with stories about what this means to the country and the Obama administration. When I saw these reports I yawned, bored in the extreme. Was I being selfish? I suppose but what I immediately thought of when I heard about the national unemployment rate was the fact that the Office of Disability Employment Policy at the U.S. Department of Labor Surveys estimates that 21 million out of 26 million people with a disability are not even in the work force. 21 million people do not simply give up. The vast majority of these people want to work but after years and even a decade of looking came to the only logical conclusion: people with a disability face an uphill struggle to enter the work force. One could even make the case the struggle to find work is hopeless. Here I am not referring to a job of choice but any job at all. Combine the overwhelming odds against finding employment with the fact many people with a disability rely on government health care in which there is a disincentive to work (they lose health care if they earn too much). The net result is that the vast majority of people with a disability are only marginally attached to the work force in this country. This creates not only economic hardship, a loss of self worth, but further isolates people with a disability socially. Like it or not, we often judge others by what they do for a living and economic resources dictate one's lifestyle.
I wish I had a solution to the unemployment problem people with a disability routinely encounter. If I did I would not be marginally employed as I am now. My marginalization is directly related my disability yet also has much to do with the fact I am in a field, anthropology, that, like many other social sciences, is no longer valued in the form of tenure track positions. Universities have learned from large corporations and scaled back the number of people they hire full time (benefits are a pipe dream). Hence about half of all college professors are part timers like me and I consider myself a highly educated day laborer. But unlike my peers I encounter significant obstacles--social, economic, and architectural. The result is jobs are harder to find and employers do not want to hire people with a disability. Based on my observations and personal experience people with a disability are not represented in the work force. I rarely if ever encounter a person with a disability and I make it a point to ask students I teach if they have ever had a professor that used a wheelchair. Not once in the last 15 years has a student answered yes. This is a real problem and the utter absence of people with a disability in the professorial work force signifies something more significant is taking place. The same can be said for dozens of other professions.
I have repeatedly been told that employers fear making work place accommodations will be costly, require expensive technology, or worry the person with a disability is not capable of doing a given job. These misconceptions are hard to eradicate. Department of Labor figures estimate that 56% of accommodations cost nothing and if any money is involved the cost is less than $600. I for one have never had an institution make any work place accommodation in spite of the fact they were required to do so. For example, when I teach if the table is too low I take an eraser and stick it under the legs of the table. Problem solved. But what happens if I want to use the bathroom? I am often out of luck as I know to not even ask because the answer is always a resounding no. In contrast to many others with a disability, I have been able to scrabble a series of dead end jobs together and, with the support of my family, somehow make ends meet. I do not take my struggles to heart as I know much is going on well beyond my individual qualifications. There is a social, economic and institutional bias that makes entry into the work force exceedingly difficult and impossible for some. This is grossly wrong and I do not know how to force society to change. All I can do is go to work, demonstrate that I am a valuable employee and a competent if not dedicated teacher. In shot, I do my best every day. Most days this seems to be inadequate at best for I know there are millions of people with a disability that would love to have the chances and opportunities that I have had. I am a lucky man and can only hope with time others like me will get a chance to demonstrate their abilities as well.
Ian Pearl: The Dog that Bit Back
Tuesday, November 24, 2009
Last month I read about Ian Pearl and hoped that his story would get wide spread coverage and become part of the debate about health care reform. Sadly, I suspect few people recall who and why Ian Pearl was in the news. And yes Pearl was in news in the form of stories in the Washington Post, Miami Herald, Huffington Post, and CNN. Let me refresh your memory. Ian Pearl is a 37 year old man who was one of the first students with a disability mainstreamed in Broward County, Florida. Pearl has Muscular Dystrophy and has used a ventilator for the last 18 years. Usually when one uses a ventilator the person in question ends up in an institution. In Pearl's case he was lucky in that his father purchased an insurance policy in 1981 with Guardian Life, a multi billion dollar New York based insurance company. The policy had no lifetime benefit cap and covered home nursing care. In October Guardian Life withdrew Pearl's policy from all policy holders in New York where his father's business is based. The "replacement" plan had limited benefits and home nursing was not covered. For Pearl, this change was a death sentence (as a last resort he would have been admitted to a state hospital under Medicaid). Pearl filed a lawsuit and asked the Department of Health and Human Services to force Guardian Life to continue his insurance. All this is pretty humdrum, typical big business. Who cares if one man will die or be forced into a nursing facility where his life expectancy is nil? This all changed when Pearl's lawsuit uncovered inflammatory documents that established Guardian Life had created a "hit list" of its costliest members they wanted to "get rid of". Who did Guardian Life target? People with muscular dystrophy, multiple sclerosis, brain injury, and paralysis. Guardian executives referred to people like Pearl and my paralyzed ass as "dogs" and "trainwrecks". They openly debated how to get rid of people with expensive and chronic conditions. It is against the law to cancel individual members with health problems so Guardian Life decided to cancel plans for all members of the specific plan Pearl had. A federal court ruled the Guardian Life actions were legal, barring an order by the Department of Health and Human Services, and that as of December 1 Pearl would lose his policy.
Ian Pearl's story has a happy ending. Guardian Life reversed its decision once it got bad publicity and restored Pearl's policy. Surely characterizing Pearl as a "dog" and "trainwreck" did not help Guardian Life's image and prompted the CEO, Dennis Manning, to apologize for the memo. Guardian Life's contention that policies such as Pearl's that offered unlimited home nursing was too expensive for small business customers to buy failed to resonate. Legislators have also stepped into the picture in New York and are trying to pass what they call Ian's Law that will prevent insurance companies from discontinuing policies deemed too expensive. I am obviously relieved for Pearl but know his ability to fight back was not the norm. Thus I cannot help but wonder how many others "dogs" with muscular dystrophy, multiple sclerosis, brain injury, and paralysis have had their policies discontinued? How many people have died as a result of Guardian Life's effort? More generally, are chronic conditions i.e. expensive medical care the reason why people spend so much on health care policies? Guardian Life is an old company whose tag line is "Solutions for Life". Well, it appears Guardian Life's solution is get rid of people like Pearl and me whose life is not valued or at least deemed too costly.
Guardian Life is not the entire problem but rather a symbol of a much larger issue. First, there are no ethics in business. We live in an era of global capitalism where the bottom line, money, is more important than any other variable. No amount of individual wealth is enough. This is a new era for Americans my age that came of age when paternalistic capitalism was the norm. I vividly recall my father telling me his company and others like it had the moral responsibility to take care of its workers. Can you imagine any CEO stating that today? I am not naive. My father and other wealthy capitalists wanted to make a profit but knew the difference between right and wrong. Targeting "dogs", people that truly need health insurance, is simply wrong--especially for a company that reported $7.5 billion dollars in revenue and a net income of $437 million dollars. What I want to know is why did no one at Guardian Life state the obvious--people like Pearl need their policy to survive and as such the policy must be honored even if they lose money. Second, health care costs in the last decade have sky rocketed. Every person that has been ill or can read a newspaper knows this. At the same time, companies like Guardian Life have drastically scaled back the benefits in the types of plans it carries. In home nursing care is deemed too costly and by contemporary standards Pearl's policy is generous. The overwhelming bias against home care reveals what ADAPT has been fighting for years--the nursing home bias. It is far more humane and economical to provide care for a person like Pearl in his own home. Think about it this way: would you like to live in a hospital or nursing facility at age 37? I think not. Third, I have noticed in the last few years that popular culture and the mass media have decided that life on a ventilator is no life at all. TV shows such as ER and movies such as Million Dollar Baby receive accolades while depicting life on a ventilator or with a disability such as paralysis as a fate worse than death. This is infuriating to me for it contradicts everything that I know and believe. We humans are highly adaptable, have great individual variation and these are traits that should be valued. Instead, there is an effort under way to kill Pearl and by extension people like me or at least manipulate our bodies in ways that are questionable at best (think the Ashley Treatment).
I am not being extremist--if you doubt me read the work of Peter Singer who would prefer people like Pearl did not exist as he would encourage parents to kill infants with disabilities. A belief that has filtered into neonatal units as the journal Pediatrics recently reported nurses considered death preferable to a life with a disability. How and when did people with a disability become expensive unwanted commodities is a question I do not have the answer to. A variable surely is simple numbers, there are more people with a disability living a rich and full life. But that life takes money and support in the form of adequate health care. More importantly though life with a disability must be valued. People at Guardian Life cannot consider Pearl and me to be dogs. We are human beings and our humanity must be recognized. But this effort does not begin or end with Guardian Life. My neighbors must consider me, a man that uses a wheelchair, a part of the community and demand public buildings be accessible. Schools must see past a given disability and acknowledge and value the potential of all students. Colleges must do the same and make an effort to include disability studies into the larger curriculum. Corporations must hire people with a disability. Citizens must elect candidates with a disability. In order for me to not feel a class apart from the rest of society people like me must be included at every social strata. Until that happens corporations like Guardian Life will continue to do everything in its power to get rid of dogs like Pearl and me. Thankfully some dogs like Pearl bite back and this bad cripple will continue to wield a mean pen and assert his civil rights.
Ian Pearl's story has a happy ending. Guardian Life reversed its decision once it got bad publicity and restored Pearl's policy. Surely characterizing Pearl as a "dog" and "trainwreck" did not help Guardian Life's image and prompted the CEO, Dennis Manning, to apologize for the memo. Guardian Life's contention that policies such as Pearl's that offered unlimited home nursing was too expensive for small business customers to buy failed to resonate. Legislators have also stepped into the picture in New York and are trying to pass what they call Ian's Law that will prevent insurance companies from discontinuing policies deemed too expensive. I am obviously relieved for Pearl but know his ability to fight back was not the norm. Thus I cannot help but wonder how many others "dogs" with muscular dystrophy, multiple sclerosis, brain injury, and paralysis have had their policies discontinued? How many people have died as a result of Guardian Life's effort? More generally, are chronic conditions i.e. expensive medical care the reason why people spend so much on health care policies? Guardian Life is an old company whose tag line is "Solutions for Life". Well, it appears Guardian Life's solution is get rid of people like Pearl and me whose life is not valued or at least deemed too costly.
Guardian Life is not the entire problem but rather a symbol of a much larger issue. First, there are no ethics in business. We live in an era of global capitalism where the bottom line, money, is more important than any other variable. No amount of individual wealth is enough. This is a new era for Americans my age that came of age when paternalistic capitalism was the norm. I vividly recall my father telling me his company and others like it had the moral responsibility to take care of its workers. Can you imagine any CEO stating that today? I am not naive. My father and other wealthy capitalists wanted to make a profit but knew the difference between right and wrong. Targeting "dogs", people that truly need health insurance, is simply wrong--especially for a company that reported $7.5 billion dollars in revenue and a net income of $437 million dollars. What I want to know is why did no one at Guardian Life state the obvious--people like Pearl need their policy to survive and as such the policy must be honored even if they lose money. Second, health care costs in the last decade have sky rocketed. Every person that has been ill or can read a newspaper knows this. At the same time, companies like Guardian Life have drastically scaled back the benefits in the types of plans it carries. In home nursing care is deemed too costly and by contemporary standards Pearl's policy is generous. The overwhelming bias against home care reveals what ADAPT has been fighting for years--the nursing home bias. It is far more humane and economical to provide care for a person like Pearl in his own home. Think about it this way: would you like to live in a hospital or nursing facility at age 37? I think not. Third, I have noticed in the last few years that popular culture and the mass media have decided that life on a ventilator is no life at all. TV shows such as ER and movies such as Million Dollar Baby receive accolades while depicting life on a ventilator or with a disability such as paralysis as a fate worse than death. This is infuriating to me for it contradicts everything that I know and believe. We humans are highly adaptable, have great individual variation and these are traits that should be valued. Instead, there is an effort under way to kill Pearl and by extension people like me or at least manipulate our bodies in ways that are questionable at best (think the Ashley Treatment).
I am not being extremist--if you doubt me read the work of Peter Singer who would prefer people like Pearl did not exist as he would encourage parents to kill infants with disabilities. A belief that has filtered into neonatal units as the journal Pediatrics recently reported nurses considered death preferable to a life with a disability. How and when did people with a disability become expensive unwanted commodities is a question I do not have the answer to. A variable surely is simple numbers, there are more people with a disability living a rich and full life. But that life takes money and support in the form of adequate health care. More importantly though life with a disability must be valued. People at Guardian Life cannot consider Pearl and me to be dogs. We are human beings and our humanity must be recognized. But this effort does not begin or end with Guardian Life. My neighbors must consider me, a man that uses a wheelchair, a part of the community and demand public buildings be accessible. Schools must see past a given disability and acknowledge and value the potential of all students. Colleges must do the same and make an effort to include disability studies into the larger curriculum. Corporations must hire people with a disability. Citizens must elect candidates with a disability. In order for me to not feel a class apart from the rest of society people like me must be included at every social strata. Until that happens corporations like Guardian Life will continue to do everything in its power to get rid of dogs like Pearl and me. Thankfully some dogs like Pearl bite back and this bad cripple will continue to wield a mean pen and assert his civil rights.
Wales�powering the world�really?!
Thursday, November 19, 2009
When I mention the title of this project to people, I am sometimes met with a look of scepticism, a look that asks �Wales�powering the world�really?!�. So, in my first blog entry of the project, I am going to take the opportunity to both explain and justify the ostensibly grand title.
From the 18th century, through to the mid 20th century, Wales was a major industrial centre, with the export of its rich mineral deposits indeed �powering the world� (or at least assisting with its industrial and domestic need for coal, iron, slate, steel and tin plate). The collections chosen for the project reflect Wales� advances and achievements, not only on a local and national level, but as part of the global industrial revolution. 3 months, and 1 and a half collections, into the project, I have come across several records which reveal this.
I recently completed cataloguing the first collection, Vivian and Sons Limited, Copper Smelters of Swansea. Swansea was nicknamed �Copperopolis� due to the huge amount of copper production and smelting, and by the mid 19th century, Vivian & Sons were the largest exporters of finished copper in the UK. The technical drawings, reports and patents demonstrate the scientific developments made by the business. Vivian and Sons were also members of the Copper Trade Association which was formed in 1824 to control of the price of manufactured copper internationally.
I am currently working on a collection from Carmarthenshire Archive Service, Emlyn Anthracite Colliery and Brickworks. South Wales was the major source of anthracite coal in Great Britain (anthracite is a hard coal, which burns slowly with a smokeless flame). An article in �The Industrial World� describes how the company was pioneering in their use of scientific methods. They had their own specialised research department, and product guarantees for quality, purity and ash content. Plans and reports in the collection show the lengthy considerations taken into account when designing and installing a modern type of screening and washing plant. The anthracite was exported to Europe, North Africa, Canada, the United States and South America. A photograph in the collection shows an anthracite exhibition at the Salon Des Arts Menagers, Paris in 1938.
It could be said that the heavy industries of Wales, and South Wales in particular, did, quite literally, �power� the world with its exports fuelling steamships, railways, etc and providing metal for war and industry. Wales also �powered� the world through leading by example, with technological and scientific advances in processes such as smelting and mining. The title of the project, I feel, is not over the top, but reflects the chosen collections� value as a resource for researching Wales� great industrial past.
From the 18th century, through to the mid 20th century, Wales was a major industrial centre, with the export of its rich mineral deposits indeed �powering the world� (or at least assisting with its industrial and domestic need for coal, iron, slate, steel and tin plate). The collections chosen for the project reflect Wales� advances and achievements, not only on a local and national level, but as part of the global industrial revolution. 3 months, and 1 and a half collections, into the project, I have come across several records which reveal this.
I recently completed cataloguing the first collection, Vivian and Sons Limited, Copper Smelters of Swansea. Swansea was nicknamed �Copperopolis� due to the huge amount of copper production and smelting, and by the mid 19th century, Vivian & Sons were the largest exporters of finished copper in the UK. The technical drawings, reports and patents demonstrate the scientific developments made by the business. Vivian and Sons were also members of the Copper Trade Association which was formed in 1824 to control of the price of manufactured copper internationally.
I am currently working on a collection from Carmarthenshire Archive Service, Emlyn Anthracite Colliery and Brickworks. South Wales was the major source of anthracite coal in Great Britain (anthracite is a hard coal, which burns slowly with a smokeless flame). An article in �The Industrial World� describes how the company was pioneering in their use of scientific methods. They had their own specialised research department, and product guarantees for quality, purity and ash content. Plans and reports in the collection show the lengthy considerations taken into account when designing and installing a modern type of screening and washing plant. The anthracite was exported to Europe, North Africa, Canada, the United States and South America. A photograph in the collection shows an anthracite exhibition at the Salon Des Arts Menagers, Paris in 1938.
It could be said that the heavy industries of Wales, and South Wales in particular, did, quite literally, �power� the world with its exports fuelling steamships, railways, etc and providing metal for war and industry. Wales also �powered� the world through leading by example, with technological and scientific advances in processes such as smelting and mining. The title of the project, I feel, is not over the top, but reflects the chosen collections� value as a resource for researching Wales� great industrial past.
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