We need to talk. We need to have a serious discussion about health: more specifically, health care of the preventive kind. This is an important conversation, as it is one that affects us and our loved ones.

It is a basic human instinct to put off until tomorrow what we find distasteful or difficult today. Some of us are so good at it that we can put off or postpone for years those things that we do not like. I can attest to that, through personal experience, as I am my own worst example.

In an earlier blog I discussed the years when I was invincible, prior to my disabling spinal cord injury in 1988. Healthy living, physical fitness and a lot of luck meant that I only saw doctors a few times to stitch something up or make sure I had done no permanent damage with a sports-related concussion. During my 23-year railroad career, the only physical examination I had was my preemployment physical.

Even after my spinal cord injury, it has been far easier to deal only with the most pressing physical issues instead of getting overall checkups. Since my doctor visits have usually been scheduled to deal with specific ailments, the only additional measurements taken that might indicate some other types of problems were my blood pressure, temperature and pulse. Those simple tests did not reveal any significant problems, so I went about my life without changing habits or worrying about some of the other minor indications that things might not be quite right when it came to my health.

It is pretty easy to ignore the little things even though you fear what they might be indicators of regarding your health. The truth is that there is nothing to be gained by ignoring them. Can frequent, or even periodic, headaches or dizziness be an indicator of a brain tumor, aneurysm or something else that might be just as sinister? Could frequent awakening during the night, or still being exhausted after getting up in the morning, be a sign of sleep apnea?

How about that continuing series of urinary tract infections that have been treated with every type of antibiotic available to modern medicine? Could they be a harbinger of bladder cancer or perhaps renal failure in the future? What happens when the germs in our system become resistant to even the most powerful antibiotics?

There are even more things that should concern us and prompt us to have a conversation with a medical professional. That periodic tingling or numbness of our lips or one side of our face might be a sign of a blood vessel becoming blocked, or an indicator of high blood pressure that might lead to a stroke.

The rare but frightening spots of blood that have shown up in the toilet periodically could be a symptom of five or six different maladies of minor to major concern. All require a look at our innards by someone who specializes in whatever can go wrong with such private parts. Unusual changes in spasticity, flexibility or our capabilities for self-care might merit a discussion with a physiatrist, neurologist or others who specialize in our particular type of disability.

Changes in hearing or vision, especially if they occur relatively quickly, are a sign that some medical attention is needed. A skilled optometrist or ophthalmologist can detect early onset of glaucoma or cataracts, and might be able to spot indicators of more serious issues taking place in other parts of the body.

Some of those items get more common as we age, or if we have close relatives who have had certain diseases or complications related to the above. When you add in the additional indicators that might be unique to spinal cord injury or disease, or similar paralyzing disabilities, the signals being sent by our bodies can become even more complex.

Several of the aforementioned items have been a part of my life, and seem to be occurring more frequently recently. I found that the menu of medications that I was ingesting each day, when I included those that were recommended by well-meaning friends and could be purchased over-the-counter, had risen to over 25 types of pills. It was only recently that my primary care physician was able to start reducing the list through continuing discussions with me concerning how I was feeling, and coupling those discussions with blood tests to see how those changes were affecting me.

Yes, it’s human nature to procrastinate, especially if we can convince ourselves that some signal our body is sending doesn’t warrant review by a doctor. I don’t know about you, but I think it’s better to heed those signals than to try to explain to my family why I continued to ignore such warning signs.

© 2012 Michael Collins

Taking my own advice as recommended in my last two blogs, I have submitted the following to the Department of Justice at the regulations.gov website. I hope you are all taking similar action.

Testimony to DOJ NPRM re Enforcement of ADA Pool Lift Requirements
Submitted by Michael C. Collins
April 3, 2012

Enforce all aspects of the Americans with Disabilities Act:  this is not a new regulation, as a requirement to have pool lifts or other types of access available for public pools has been a key component of the law since passage of the ADA in 1990. The failure of some hotels to accomplish that installation has resulted in very few penalties. This requirement is not unduly burdensome, and the availability of swimming pools and spas is considered a primary attraction for patrons or guests at many types of public accommodations.

People with disabilities should not be relegated to sitting poolside, watching their families and friends enjoy the water. Those in the lodging industry who complained to Congress have likely failed to comply with existing regulations for 20 years, so apparently they feel it is important to set aside a standard that provides the necessary accessibility to features that are enjoyed by the rest of American society. I feel that a survey of the “hospitality” industry would reveal that only a small percentage of pool owners have bothered to provide any type of pool lifts for the use of their patrons who need them due to disability.

This is a disturbing situation, as the argument used to stop enforcement of that portion of the law is a flimsy one at best. Any public accommodation that could not accomplish the work due to financial hardship has always had a means of avoiding fines that might have been levied for not improving access. There was even a ‘safe harbor’ granted when these new regulations were posted, allowing those with pool lifts already installed per the 1991 ADAAG to postpone improvements for the time being.

The significance of this latest action cannot be ignored. The ADA is the major civil rights bill for people with disabilities, and was originally passed by Congress only after years of planning to assure that it would accomplish its goal of improving access to our society without unduly burdening anyone. Provisions of the ADA that required architectural improvements were phased in over time, with liberal tax credits and deductions allowed for those businesses that made improvements as the law required. Changes that were architecturally infeasible or that caused financial hardship did not even have to be made.

Excusing the violation of any civil rights law is unprecedented, and suspending the enforcement of ADA regulations for the benefit of the prosperous hospitality industry is unconscionable.

Congress has begun to whittle away at our civil rights as established by the ADA almost 22 years ago. It sets a dangerous precedent.

Which other sections of the law will be targeted next? Will it be in the areas of public rights of way, which include the sidewalks and curb ramps we depend upon for wheelchair access to our communities? Will it mean that hotels with insufficient wheelchair accessible rooms or roll-in showers will lobby to strike those provisions of the law? Could businesses that fail to maintain proper accessible parking spaces plead for removal of parking requirements in order to gain back the spaces that became our access aisles? All of these items covered by the ADA have been the subject of DOJ enforcement action in the past, as well as provisions that provide us access to employment, government services, kiosks, websites and interpreters for those who need them.

Disability civil rights are critical to our enjoyment of and access to our society. Lessening or eliminating similar civil rights would not be acceptable to other protected groups, whether for race, religion or gender. This proposed action is not acceptable to us. Do NOT stop enforcing any part of the ADA or it’s related regulations.

© 2012 Michael Collins

Doom and Gloom; Disgusted; Fed up; Beat up, or Beat down? All of these terms could describe various moods I have expressed recently about attacks on disability civil rights and our ability to live independently. Please accept my apologies if my recent blogs on the elimination of the CLASS program and the current push to keep the Department of Justice from enforcing some Americans with Disabilities Act (ADA) regulations have depressed or disappointed you. I don’t think you’re alone.

Congress apparently has no qualms about eliminating rights granted to us with passage of the ADA in 1990. As I stated in my last blog, both the House and Senate are considering legislation that would prevent the Attorney General from administering or enforcing ADA regulations that require the permanent installation of pool lifts. This is an unprecedented action, as it denies the civil rights of an entire class of protected individuals: people with disabilities.

Despite the damage being done by the aforementioned actions, there are a few bright spots that are also worth mentioning. We do have allies in Congress and throughout government who continue to serve as our champions when our rights are threatened. Just last week, Senator DeMint tried to force a quick vote on the Senate bill (S. 2191) that would prevent the Attorney General from enforcing the ADA’s requirements regarding pool lifts. His move was met by an immediate objection from Senator Tom Harkin, Chair of the Senate Health Education Labor and Pensions Committee, who has been a champion of the ADA since it was first proposed. That bill is still alive, but advocates have rallied to phone and write members of Congress to let them know that these bills should not pass.

We can still have an impact on the enforcement of the pool lift regulations, as the Department of Justice (DOJ) has voluntarily suspended enforcement until May 21, 2012 and is asking the public to comment on that suspension (and a possible 180 day extension of it) by responding online to the Notice of Proposed Rulemaking
at regulations.gov. The initial deadline for those comments is April 4, 2012! If full access to recreation is important to you, I would recommend that you click on the above link and leave your comments as soon as possible.

Another bright spot is the work that is being done by the US Access Board to follow up on initial ADA regulations in several areas that could benefit from a more refined definition. Working in tandem with the DOJ, they solicited input on the height and characteristics of hotel beds, and have been working for several years on reviewing the dimensions of medical equipment and establishing standards for accessible medical devices of all types. The Board has scheduled two hearings on diagnostic medical equipment, and will be taking public testimony on their recommendations through June 8, 2012. The Centers for Medicare and Medicaid Services (CMS) has also joined with the DOJ in publishing guidance for the medical profession about how to provide care for people with mobility disabilities.

DOJ and the Access Board continue to refine the ADA Standards for Accessible Design in order to expedite compliance through better understanding of the regulations by business owners and government agencies who need to comply with them. New ADA regulations which have taken effect during the past two years provide additional guidance on such items as service animals, the use of Segways as mobility devices, recreational facilities of all types, timeshare accessibility, ticketing and lodging reservations. The Access Board recently concluded two hearings on the Telecommunications Act Accessibility Guidelines, and additional action will be taken once the hearing testimony has been processed.

While it appears that not much improvement has occurred in the last 20 years, expanded employment opportunities for people with disabilities are actually bright spots. Public testimony is being evaluated on a new rule by the Department of Labor that would require federal contractors to increase their percentage of employees with disabilities to 7% of their total workforce. That change coincides with an effort led by the Office of Personnel Management and DOL to increase federal agency disability employment percentages.

The sun is really shining on three cities that have recently improved access to accessible taxi cabs because of solid work by disability advocates. Congratulations are due to those who fought for those changes in New York City, Washington, DC and Chicago. Thanks to their efforts, and if the Supreme Court will just leave the Affordable Care Act
intact, I may have a use for my sunglasses after all.

© 2012 Michael Collins

When we hear the term “perfect storm” it usually refers to some type of confluence in the atmosphere that leads to a wild weather phenomenon that threatens life and damages property. In the real world most such storms are of limited duration and, while they may do major damage and literally paralyze parts of the country for a period of days or weeks, people clean up and get on with their lives. For those of us living in the world of disability, our storms can be just as destructive and may last much longer.



Earlier this year I wrote about the move underway in Congress to repeal the provisions of the CLASS long-term-care program by passage of the ‘‘Fiscal Responsibility and Retirement Security Act of 2012.” That has now been accomplished, so people with disabilities will once again be unable to pay in advance for long-term care insurance that might support us as we age. The reason for the repeal was that the plan to pay for the program would not have actually done so. I would like to think that there are plenty of smart people in government who could have devised a way to make that program self-supporting if they really wanted to work at it.

Another storm has boiled up around our beloved Americans with Disabilities Act (ADA).  The United States Access Board issued some new ADA standards in 2010, and they took effect earlier this month. The changes were meant to improve the law, but unfortunately the lodging industry has seen this as an opportunity to seek repeal of provisions in the ADA that they feel are burdensome. The repeal movement began with protests about the requirement that all hotels and public swimming pools had to have wheelchair lifts installed that were permanently attached and immediately available for the use of people with disabilities who might want to take a dip with their families and friends.

The White House and members of Congress were lobbied hard on the issue, as was the Department of Justice
that is responsible for ADA enforcement. This has resulted in introduction of bills in both the House
and Senate that prohibit the Attorney General from enforcing accessibility regulations relating to pools at public accommodations and other public venues.

It is important for people to realize that this is not a new regulation, as a requirement to have pool lifts or other types of access available to public pools has been in effect since passage of the ADA in 1990. The failure of some hotels to accomplish that installation has resulted in very few penalties. Those in the lodging industry who complained have not taken the necessary action for 22 years, so apparently they felt it was important to simply set aside a standard that provides the necessary accessibility to features that are enjoyed by the rest of American society.

This is a disturbing situation, as the argument used to stop enforcement of that portion of the law was a flimsy one at best. Any public accommodation that could not accomplish the work due to financial hardship has always had a means of avoiding fines that might have been levied for not improving access.

The significance of this action cannot be ignored. The ADA is the major civil rights bill for people with disabilities, and was originally passed only after years of planning to assure that it would accomplish its goal of improving access to our society without unduly burdening anyone. Provisions of the ADA that required architectural improvements were phased in over time, with liberal tax credits and deductions allowed for those businesses that made improvements as the law required. Changes that were architecturally infeasible or that caused financial hardship did not even have to be made.

Congress has begun to whittle away at our civil rights as established by the ADA almost 22 years ago. I shudder when I think of which other sections of the law will be targeted next. Will it be in the area of public rights of way, which include the very sidewalks and curb ramps we depend upon? Will it mean that hotels with insufficient accessible rooms or roll-in showers will lobby to strike those provisions of the law? Could businesses that fail to maintain proper accessible parking work toward removal of parking requirements in order to gain back the spaces that became our access aisles? All of these items have been the subject of DOJ enforcement action in the past, as well as provisions that provide us access to employment, government services, kiosks, websites and interpreters for those who need them.

We all have an obligation, for our friends and family as well as future generations, to express our opinions about the type of actions that are occurring today. It is important to let your elected officials know that disability civil rights are critical to our enjoyment of and access to our society.

Lessening or eliminating similar civil rights would not be acceptable to other protected groups, whether for race, religion or gender. It should not be acceptable to us.

© 2012 Michael Collins

Bulletin: Showing a complete lack of CLASS, elected representatives in Congress proudly proclaimed that they were voting to repeal the CLASS (Community Living Assistance Services and Supports) provisions in the Affordable Care Act. Read More

It’s the start of another year, but some things remain unchanged. At this moment, thousands of my colleagues are experiencing the effects of a glut of health conditions that can result in premature death and the onset of diseases most people will never face.  We wait, impatiently, for research scientists to discover the elusive cure for paralysis. That cure is unlikely to help many of us who are wheeling around today if we are so out of shape and unhealthy that we are seen as not able to benefit from whatever cure protocols are discovered. Read More

Regifting is an art. In some families the word is taboo, but with seven siblings it was a common practice in our family as I grew up. Passing the clothes and toys we had outgrown down to younger brothers and sisters did not qualify as regifting. Rewrapping a new or slightly used Christmas or birthday gift did qualify, and was often the practice when we did not take the time to actually shop for that special someone in our family. Read More

Recounting my early years, it amazes me that my circle of friends survived to adulthood, especially absent major traumas. We didn’t consider strains, sprains, concussions and fractures to be major injuries, as we healed from those in time. We even jumped or dove off towering cliffs into murky lakes during our teen years, but none of us drowned or became paralyzed. Read More

It sometimes amazes me how easy it is to kick off a cascade of memories. One random thought leads to another, and soon they keep coming. It almost seems like they've been standing there, like dominoes, waiting for someone to knock the first one over. Read More

Our friends at the federal Department of Transportation (DOT) have done it!  They have expanded our transportation options while traveling on trains and on paratransit vehicles. The new regulations, which were posted earlier this month, take effect at various times during 2011. Read More

In the dictionary, inertia is defined as: The tendency of a body at rest to remain at rest or of a body in straight line motion to stay in motion in a straight line unless acted on by an outside force. Read More

It’s everywhere I look: tangled in plastic bags in the closet, twisted together in the backpack of my wheelchair, lined up neatly in a kitchen drawer, coiled on my workbench, standing ready in a toolbox and my suitcase, and even lying flat beneath my feet.  Read More

Treasure hunting has been an important pastime throughout history, and the search for lost treasures can span decades or centuries and cost much money and even some lives. We have read with interest, and watched movies, about the searches for King Solomon’s mines, the pirate Blackbeard’s plunder  and many ships that sank in storms, taking their gold and silver cargoes with them to the bottom of the seas. Read More

What “ticks” you off? Is it the para-transit system with reservation rules that don't work with your lifestyle? Do you want to take a local trip spontaneously, but find you should have planned for it days before? Do the hours of service end before you wanted to come home? Read More

It happened again! Another misguided airline decided to set aside the rights of a passenger who was disabled, rights granted by the Air Carrier Access Act (ACAA), and have him removed from a plane without a valid cause. This was at least the third such incident in the last year and, like the prior cases, involved someone with a mobility impairment who posed no risk to fellow passengers, the flight crew or themselves. Read More