Brooke Hopkins Dies

On July 17 I took strong exception to an article in the New York Times by Robin Marantz Henig. In my post, The NYT Infuriates Me, I took Henig to task for how she described the disabled body. This was not intended as a critique of Brooke Hopkins or his wife who is a well known bioethicist. For me, at issue was with the portrayal of the couple by the journalist in question.  For those unfamiliar with disability, I suspect it is possible to conclude death is preferable to life with a disability.  The reason I note this is that I was sad to learn that Brooke died. Here is a link about Brooke Hopkins death: http://www.sltrib.com/sltrib/news/56674337-78/hopkins-accident-battin-bike.html.csp

Assisted Suicide and Medical Technology: A Social Failure

I was paralyzed in 1978. As my son would say that was a long time ago--the olden days in his estimation. Without him around my summer has seemed disjointed. Nothing has worked out quite like I had hoped and I have been preoccupied with the Fall. I start teaching August 26 and I will hold two classes before Labor Day, the unofficial end of the summer. I am nervous too. I will be teaching honors students at Syracuse University. My class, "From Prenatal Testing to Alzheimer's: Issues in Bioethics and Disability" is new and my first firmly rooted in bioethics. I veered head long into bioethics in 2006 when I heard about the Ashley Treatment or what has become known as growth attenuation. I was stunned in 2006 and remain stunned in 2013 that such a procedure could be performed. How I wonder could an ethics committee allow this to happen? My interest in growth attenuation led me to delve deeply into assisted suicide legislation and this has rekindled a long dormant interest in what happens to people after they become paralyzed.  I am now troubled not only about the larger cultural push to accept assisted suicide but also the severely limited amount of time people who experience a sudden spinal cord injury are given to adapt to paralysis. Add to this a rapidly expanding elderly population and increasing reliance on medical technology to prolong life, an absolute lack of care about vulnerable populations, and a toxic social situation has been created.

The noted bioethicist Daniel Callahan has written about our over reliance on medical technology in Taming the Beast, a book I highly recommend. Callahan notes that many directly benefit from advances in medical technology but there is a down side--something anthropologists and archaeologists have often observed about many societies, complex and simple. High tech medical care is not cheap and is in fact highly profitable. One corporation that has created a cash cow is the wound vacuum. 7 million people world wide have used the wound vacuum.  There are 42,000 units in service, and KCI, a company I quickly learned to despise when I used a wound vacuum, has a 1,000 member clinical sales team. There is no question my wound healed more quickly because of the wound vacuum. What KCI and other corporations that produce high tech medical products do not want consumers to think about is cost and what happens when a company like KCI  owns a virtual monopoly on wound care. Yes I benefited from the wound vacuum. It is a spectacular invention, has saved many lives, and revolutionized wound care. But I was also ground down emotionally and financially from the use of the wound vacuum for an extended period of time. What keeps me up at night, what makes me worried about elderly people, the terminally ill, chronically ill,  and disabled is the impact high tech medical care has on a human being. This was a hard lesson I learned in 2010 into 2011. I received outstanding medical care, saw superb wound care specialists, met a skilled surgeon who followed my wound care from beginning to end, and am deeply indebted to my family who were more supportive than a person could possibly hope.

So here I sit at my desk fully healed and I can safely say 2010/2011 was the worst period of my life. I am a fundamentally different person as a result. Bodily my life was saved by the wound vacuum. My confidence  however was shattered in the process. My body took a year to heal but my mind is still very much a work in progress. Always interested in marginalized populations as many anthropologists are, my resolve to inject a dose of humanism in medical care and bioethics has reached new heights. I am deeply disturbed by how vulnerable people are treated. I am not suggesting the medical system, even a for profit system that exists in the United States, is designed to grind up and knowingly kill vulnerable people. KCI wanted my wound to heal as did I but at what cost? More generally, how do we frame illness for the poor, elderly, and disabled? Are we as a culture willing to empower such people and help them heal? Are we willing to seek the best possible care for all people? In a word no. Surely I am exaggerating the situation. Sorry but no. The medical industrial complex is a hostile place for those that are different and costly. Of course no institution or person will admit to such hostility. It is always framed in socially acceptable language. For example, the buzz word "patient centered care" is often used in and outside of a clinical setting.  To me the true meaning of the words "patient centered care" are sorry but you are on your own. Enter stage left a supposedly informed and objective health care provider who will explain your options and let you make your own decision. This I am sure sounds great in an office, a corporate boardroom, or at an academic conference. The clinical realty is quite different. For instance, does a paralyzed person really have a choice about using a wound vacuum if its use is not covered by health insurance. Last I checked a wound vacuum costs $130 to rent per day and this does not include the cost of nursing or wound dressings which are significant.

Further complicating "patient centered care" is the concept of "joint decision making". In theory it is easy for a physician to suggest the best possible care for a patient.  In theory such decision making strategies should be reached with equal input. The physician acts as expert guide and the patient is empowered to put plans jointly decided into practice.  I am sure a flow chart exists somewhere that beautifully illustrates this mythic equality. Excluded from this supposedly joint decision making process is the biases and preconceived notions the physician and patient may or may not have. The reality of joint decisions often falls far short of ideal. For instance, physician and patient agree that a person with a SCI and recently healed wound should relieve pressure throughout the day. This is sound advice. But what happens if the person with a recently healed wound is required to work all day and care for a family. Will an employer be willing to provide a reasonable accommodation under the ADA by letting the person in question lay down on a futon at work? Not likely--a point made by Lenny Davis in his essay "Bending Over Backwards".  Let me expand on this example. The person in question decides he or she must work. They push their body knowing their skin will breakdown. And let's say their skin does in fact breakdown. This person returns to the local wound care department. The physician and staff are not happy to see this person return. It is reasonable to assume this patient will be deemed a noncompliant patient. What will not be charted is why the person has fallen into the stigmatized category of noncompliance.

When I express my views about how people with a recent SCI are set up to fail people are shocked. When I express my views about end of life issues and how vulnerable populations are at risk I am accused of being an alarmist. The cartoon above however is not too far from the truth. When it comes to disability those I know who have successfully navigated life all were willing to adapt and be creative. Society's unwillingness to negotiate difference could be considered a failure of imagination as my friend and poet Stephen Kuusisto puts it. He is being too kind. Powerful forces exist that grind people down at a glacial pace lowering and lowering their expectations, hopes and dreams. The spirit of people with a disability and those nearing the end of their life, two different but vulnerable populations, are being crushed by an at times cruel health care system. How does this play out int he real world? Well people with a SCI are not given the time or skills needed to survive a hostile social environment. Instead, they are encouraged to use an exoskeleton, think about stem cell treatments that virtually no one can afford and are not proven to be successful, and participate in various clinical trials. Yes, money has perverted traditional rehabilitation efforts--basic hard work that helped one refine their ADLs. The result is a person suddenly finds their living situation intolerable years later. No job, no work, and no quality of life. This is a social failure of epic proportions and hence the reason the above cartoon made me laugh is because it reflects a reality that exists.

Conservative Canadian MPs Royally Screw Up with Fake Braille

The flyer above was distributed by Conservative Canadian MPs and the mailing has turned into a disaster. All major Canadian news outlets are reporting the flyer is one of the biggest blunders in political mail-out history. Conservative MPs, like our conservatives in the USA, express great concern about people with a disability. Think cheesy devoid of reality statements made by Rick  Santorum about disability and put a Canadian spin on it. The flyers are supposed to tout programs that help people with a disability enter the work force. The inclusion of braille imagery is an epic fail. Braille as many people know needs to be elevated so people with profound visual impairments can gently slide their fingers over paper embossed with a system of raised dots. I am not familiar with the preferences of blind people in terms of accessing reading material. I do know that most people I know who happen to be blind strike me as technology geeks. They always have the latest and best software on their computers. I suspect braille while still used might be nearing the end of its useful life. 

Jim Tokos, vice president of the Canadian Council on the Blind in the Ottawa Citizen stated Conservative support for people with a disability was "lacklustre". Some people who are blind are shocked that such a well funded and powerful party could make such a basic error.  In the twitter universe the conservatives are taking a beating. The slogan "Supporting jobs for all Canadians" is indeed laughable as is the statement on the flyer that maintains “Our government has been determined to help remove barriers for those who are excluded from the workforce,” the flyer states. “Our long-term prosperity depends on an inclusive workforce that utilizes the skills of all citizens.” The conservative Harper administration like our Republican Party oozes sympathy and understanding about all things disability related. Yet conservatives consistently slash social supports for people with a disability thereby undermining their ability to work. Santorum, despite his professed support for people like his disabled daughter Bella, was instrumental in undermining the passage of the UN Convention on the Rights of Persons with Disabilities. The purpose of the "Convention is to promote, protect and ensure the full and equal enjoyment of all human rights and fundamental freedoms by all persons with disabilities, and to promote respect for their inherent dignity." Not exactly controversial. In fact the word innocuous springs to mind. I found Santorum's reasons for opposing the UN Charter devoid of reality and bordering on bizarre. He characterized the Treaty as "Pandora's box" that would empower unnamed United Nations bureaucrats to make medical decisions for people like his daughter. The UN Treaty would also somehow make it impossible for children in the US to be home schooled. 

Back to Canada; the only thing more entertaining than seeing Conservative MPs embarrassed is their effort to explain how they screwed up. Manitoba Conservative MP, Shelly Glover's office in response to critics, stated the braille text on the flyer was meant to be a visual representation alone. The office added "Like other graphics on that mailer, it signifies a group of Canadians  who may face challenges in obtaining employment".  I get it now--the Conservative MPs wanted to reach out to people who are blind with a visual representation concerning why they are unemployed. Yes, that makes sense.

In my experience over the last year or so in Ontario, I would venture to guess culturally Canadians are more accepting of people with a disability. To date, I have not experienced the sort of in your face discrimination that exists in New York. I am not suggesting all is rosy north of the border and I hasten to add my experiences are too limited to form an informed opinion. One thing i do know is that  Canadians with disabilities have the lowest average income of any minority group. Canada lacks the comprehensive civil rights legislation exemplified by the Americans with Disability Act. Every year a Minister responsible for People with Disability Issues reads a report. I have read a few of these. They are long on rhetoric and short on any direct action. Two positives can be identified with regard to the conservative Harper administration. First, they ratified the UN Convention on the Rights of Persons with Disabilities. Second, they oppose assisted suicide legislation currently working its way through the court. While these are without question positive moves they are largely symbolic. I am not at all sure the Harper administration is truly dedicated to the rights of people with a disability or really sincerely opposed to assisted suicide legislation. What has done by conservatives to date is easy. The real nitty gritty work of creating a fully inclusive society has a long way to go. The distributed flyer sent out by Conservative MPs is not an innocent mistake that can be easily dismissed. To me, it highlights exactly how unaware conservatives are to the civil rights of Canadian citizens. According to the Alliance for Equality of Blind Canadians four out of five working age blind people do not have the opportunity to work. The lack of vision is not the reason blind Canadians are unemployed but rather a combination  of factors such a charity and medical model of disability, a history of exclusion, inadequate job training, lack of education etc. None if this is news to conservative Canadians. Exactly how many reports about how marginalized blind people are need to be conducted? I for one would like to see action in not onyl Canada but in the US as well. 

Travel Hassles are as Needless: One Example we Should Follow.

I have spent a lot of time on the road this year. I love to travel and I especially love driving. In fact I noticed that my car, purchased four years ago, has over 80,0000 miles. Keep in mind in 2010 I went nowhere and my car was rarely driven. I am making up for lost time in the last 18 months. On my long drives I get great thinking done. I write articles in my head, make plans for the future, and dream of going to the Baffin Islands. I also think of more realistic trips I would like to take; for instance I would love to see every Canadian city that has an OHL team. Not all my thoughts are so rosy. I often think about why travel for people with a disability is such a hassle.  Far too often I enter a hotel or motel and the desk clerk looks at me like a deer in the headlights. As is often the case, a lowered desk exists so I can actually see and be seen by a desk clerk. To me this is an obvious ADA accommodation but is more often than not exactly where plants, brochures, clip boards, etc. are located defeating its purpose. This is just part of my life. I give such small violations little thought until today when I saw a link to a hotel in the UK. I was taken aback that the below information was posted on the website.

ACCESS STATEMENT

We aim to provide the highest standards of service to all our guests and we look forward to welcoming you to The Midland and making your stay an enjoyable one. Facilities available for guests with disability needs are as follows:

Arrival

Directions to The Midland are available by clicking here, or by calling the hotel on 0161 236 3333

As you arrive at The Midland you will find parking facilities at the front of the Hotel two of which are reserved for blue badge holders. Upon arrival your vehicle can be valet parked at the Manchester Central NCP Car Park (Hotel Rate Charged) as the front of the hotel is for dropping off and picking up only. There is a level paved route from the disabled parking into the hotel where the main entrance has two revolving doors and an automated side doors as well as two manually operated wide access doors.

Concierge will be available to valet park your vehicle. If you need assistance with luggage or equipment our team of Door Staff, Porters and Concierge are on duty 24 hours.

Reception

The Reception desk is located on the ground floor of the hotel in the entrance lobby. We do have a reception desk for guests who arrive in wheelchairs and our Reception team will make this facility available as required.

You will be offered a personal check-in service with a full explanation of the hotel's facilities together with a familiarisation tour if required. Assistance is available to help take your luggage to your room.

Reception staff will also brief you on our evacuation policy and please note on your registration card if you feel that you will require specific assistance in the event of an evacuation.

The following accessible aids are available at Reception:

• Portable Induction Loop for use at Reception

• Large Button Phone

• Vibrating Pad to assist waking guests with hearing disabilities in the event of a fire alarm

To the left hand side of the Main Reception Foyer are the lifts to all floors for bedrooms, leisure club and meeting rooms.

Bedrooms

The Midland has 10 purpose built disabled rooms situated on the first, second and third floors. Nineteen of our suites / bedrooms interconnect to make a double room for use by a carer or children. Twin and double bed combinations are available.

In the bedroom there is transfer space and turning of at least 120cm either side of beds.

The flooring in our bedrooms is short pile carpet and the flooring in the bathrooms is tiled. Reading lamps are provided. Mini-bar fridges are supplied in each room and room service is 24 hours. Items of furniture can also be moved or removed on request.

The bathrooms are designed with an accessible wheel-in shower / wall mounted drop down seat and appropriate grab rails. Emergency pull cords link directly to reception from both the bedroom and bathroom. Horizontal and vertical grab rails are positioned at the side of the toilet.

In the event of fire alarm activation these rooms have both a sounder and a visual flashing light. In the event of an emergency a member of the team will assist with your evacuation if necessary. Fire evacuation advice is provided on the back of your bedroom door and a disabled refuge area is situated on every floor in case staff need to summon extra assistance during your evacuation.

Public areas

Appropriate arrangements have been made to allow easy access for disabled guests to the Octagon Lounge, French Restaurant and Wyvern Bar. The Colony Restaurant which is located on the ground floor is also easily accessible.

The public telephones are located to the left of Reception on the GMEX Corridor. There are phones at varying heights and one with a seat beside it.

All lifts have audible enunciation and tactile buttons at standard height.

Accessible toilet facilities are located within easy reach of all of our Public and Meeting Room Areas.

There is good network coverage for mobile phones within the hotel. All networks work.

Conference, Banqueting & Meeting Rooms

Our Meeting Rooms are located on the First Floor (The Lancaster, The Rolls, The Royce, The Derby, The Houghton and The Chester); The Ground Floor (The Alexander Suite); and the Lower Ground Floor (The Victoria Suite) and are easily accessible from Reception. The First Floor Meeting Rooms are easily accessed via the lifts; The Alexander Suite (Ground Floor) has a Disabled Stairlift on its Staircase that is accessed to the left of Reception. The Victoria Suite (Lower Ground Floor) can be accessed via The Main Reception Lifts.

Hearing loops are available upon request in advance. Lighting can be dimmed where required.

Please notify your conference or banquet Organiser for specific seating or staging requirements.

Accessible toilets are located within easy reach of all of our Public Areas, Meeting Rooms and Banqueting Suites

Reflections Leisure and Spa

Our Leisure Club is located on the lower ground floor. A member of the leisure team will show you the facilities and assist with access to the swimming pool and spa. Access to the poolside is on the same level and there are steps with a handrail into the shallow end of the pool. The sauna's are accessible via the changing rooms with door widths of 63cm and a step of 8cm in the ladies and 59cm and 14cm in the Men's. Seating is provided in both.

Outdoor Facilities

There are no outdoor facilities.

Alternative means of transport

If not travelling by car the nearest bus/ tram stop is located on Peter Street/Oxford Road adjacent to the front right hand side of the Hotel. The bus / tram routes will take you to the majority of Manchester's City Centre and Suburbia as well as Manchester Airport and the Cities 4 Main Train Stations (Piccadilly, Oxford Road, Victoria and Deansgate).

An accessible taxi service is available directly outside the front of the Hotel. You can also book a taxi at our Reception/ Concierge Desk

The Midland is located within 2 minutes of the Town Hall and the main Shopping Arcades of the City.

Local equipment hire companies: - The Wheelchair Centre
229 Droylsden Road, Audenshaw, Manchester M34 5ZT.
Tel: 0161-370 2661. Fax: 0161-370 5949.

Local public transport numbers:

Bus:- Manchester Buses, Chorlton Street Central Bus Station & National Express Coach Services - 0161-242 6040 or 0870 608 2 608

Train:- National rail enquiry service 08457 48 49 50 - Piccadilly train station or Manchester Victoria station

Local accessible taxi numbers:- Mantax - 0161 230 3333 - All our fleet is wheelchair accessible.

This is extraordinary but what struck me is how easy this was to produce. I would speculate that the above took about a day to create. It is amazingly helpful and useful. A clear concise narrative that answers each and every question I have when I travel.  And this in turn made me wonder exactly why every hotel in the United States does not do the same thing.

Quad Grips

Many of the people I know with a spinal cord injury have no interest in cure. In fact, I know very few paralyzed people that have even a cursory interest in cure. However, almost every person I know with a  SCI has a far more modest take on paralysis. I cannot tell you how many times I have heard a person with a SCI say "if my level of injury were just a bit lower I could..." I have expressed the same sentiment--especially when I see a paralyzed person with excellent trunk control. Man I would love to have some working abdominal muscles. If I were a T-12 instead of T-3 I swear I would be president of the United Sates and richer than Bill Gates. Joking aside, the difference between a high thorasic injury such as mine and a low thorasic injury does not have a profound impact on lives. Sure life with a lower injury leaves one with more physical ability but it does not have a huge impact on one's life in in the bigger picture. The same cannot be said for cervical SCI injuries. The difference between a quadriplegic with a C-4/5 level of injury and one with a C7/8 injury is immense. A person with a C-4/5 SCI will need much bodily assistance-- help with transfers, dressing, relieving pressure on one's ass to prevent a pressure sore, and other routine aspects of daily life most of us take for granted--myself included.  The killer for quadriplegics is time. Every aspect of their life takes more time.

Let us enter the world of quad grips.  My friend Ruth who posts at Wheelie cAthlic send me a list of items marketed to the quadriplegic market.

1. Quad push gloves cost twice as much or more than weight lifting gloves.
2. Rim foam or vynl covering are hundreds of dollars and electrical tape is equally affective.
3. Quad reachers cost hundreds of dollars.
4. Adaptive eating utensils can be replaced by palm cuff type device.
5. Adaptive computer equipment is vastly over priced.
6. Head rests and lap trays are very costly.
7. Portable "quad hydration" systems are double or triple a camelback device.

I am not expert on quadriplegic equipment. However, I was struck by the number of small companies that exist that attempt to serve the quadriplegic market. Many of these small companies sell very expensive adaptive gear that appear to me to be poorly designed. Here is one such product that retails for about $150.

Another product that appears perfect for a horror or slasher movie.

Here are quad grips designed for handcycling:

The above quad grips all approach $500. Take a look below and tell me this product cannot be adapted to as effective as the $500 grips.

Give me a roll of duct tape, some dry cell foam and I bet in less than an hour I can have a person all set up.

The above are not even the high ticket items associated with life with a cervical SCI. I would love to hear from quadriplegics who have come up with innovative and inexpensive gear. I am especially interested in driving systems. Now that is about as high ticket as one can get.