Paralysis 103: Learning to Live with Frustration

Posted by Michael Collins in Life After Paralysis on May 23, 2016

The first things that someone who is newly paralyzed will learn involve their body, and what has happened to it because of disruption of the nervous system and anything else that has been involved in creating paralysis. The impacts of pain, and possible changes to the bowels and bladder, will necessarily be learned in the early days of disability. That is Paralysis 101.

Paralysis 102 also starts in the hospital or rehab setting, and includes the steps taken in order to impart the skills and techniques required for mobility and living independently outside the shelter of a large institution with sufficient staff to answer a bell at any time, day or night. Depending on the level of injury and the type of insurance involved, Paralysis 102 might extend only a couple of days, to perhaps the better part of a month.

Paralysis 103 is more permanent, as there is no real graduation from that "class;" it impacts anyone who looks or acts like they have a disabling condition for as long as that condition is present. Frustration is the focus of Paralysis 103. Being prepared when frustration occurs is a learned skill, and it takes time to decide how best to deal with it: either confrontationally or with quiet acceptance.

Anyone who lives with paralysis, or most types of significant disabilities, will quickly learn that they might encounter the frustrations of everyday living at any time. Unfortunately, these frustrations are present despite the passage of multiple disability rights laws meant to eliminate them. Instead, politicians and bureaucrats at the state and federal levels continue to introduce new laws, regulations and policies that are often a hindrance instead of a help when it comes to the exercise of disability rights and the ability to live independently.

As just a few examples, consider some of these things that my friends and I have heard many times as we attempt to socialize and participate in the communities where we live:

-- "We are located in a historic building so are 'grandfathered,' and do not need to comply with accessibility laws."

-- "All we have in this location are high tables, but you're welcome to park your wheelchair next to your friends while they are seated at one of those tables--as long as you don't block our servers."

-- "Yes, we are accessible to diners in wheelchairs. Just park in the alley and come up the back ramp, knock on the door and we will escort you through the kitchen."

-- "There are some wheelchair tickets available for the game; they are all located in the top row of the upper level of the stadium."

-- "The platform lift that we use to lower diners in wheelchairs to the level with the waterfront view is currently broken. I'm sure that you will like this table that is located next to the kitchen so that you can get quick service."

These and similar excuses have been offered repeatedly to most people who use mobility devices to get around. Personally, I have heard them all at least once.

Today, 26 years after the passage of the Americans with Disabilities Act and eight years after it was reauthorized by the ADA Amendments Act of 2008, a surprising variety of businesses, landlords and government agencies have made virtually no effort to comply with this landmark civil rights law designed to open up society to people with all types of disabilities.

Trying to travel from Point A to Point B on an Amtrak train or a Greyhound bus while using a mobility device is a frustrating exercise that requires advance reservations and study time that is likely to exceed the time required to complete the trip itself. The majority of Amtrak's stations nationwide are still not accessible, and the corporation uses their chronic financial troubles and ongoing deficits to justify the situation.

A one-day trip on any airline can subject a person with a disability to a lifetime's worth of indignities and potential injuries, as well as irreparable damages to expensive mobility devices. The Air Carrier Access Act promised movable armrests and accessible restrooms, but the nation's air carriers have been slow to upgrade accordingly. That frustration, and level of discomfort, exists only if a person needs to fly somewhere and happens to be paralyzed.

These constant sources of frustration can have differing impacts, depending on the mindset of the individual. For some, encountering frustrations erodes confidence and takes away the desire to participate in many of the activities enjoyed by their friends and family members. Allowing that to happen can turn the most active person into a homebody with negative impacts on health and quality of life.

Fortunately, there are many others who become energized when they encounter frustrating situations, and do whatever necessary to correct the problems and eliminate such obstacles. They are the ones who file ADA or state civil rights law complaints, draft and sign petitions, write emails and letters to their elected representatives, testify at hearings, and make themselves available to the media when somebody needs to speak out about lack of accessibility in society.

The sense of satisfaction that comes from getting involved can be experienced by everyone without much effort. There are ongoing battles to protect disability rights taking place at any time, and adding another voice to those seeking to maintain such protections would be appreciated by those who lead the charge.

What are some current issues?

Late in 2015 the Disability Integration Act (S.2427) was introduced by Senator Charles Schumer, because too many states are ignoring the mandate of the Supreme Court's decision in Olmstead v. L.C. that requires home and community-based living to be the norm for people with disabilities.

At the same time, other members of our community are testifying in Congress to help defeat amendments that would require people with disabilities who have been denied access in violation of the ADA to provide written technical notification to business owners about those violations and allow them additional time to correct the situation despite having had almost 26 years to do so already.

If those two issues are of no concern, there are other battles taking place to suit every interest; the state-by-state legalization of assisted suicide is moving across the nation, and two bills (H.R. 1516/S.1013) have been introduced in Congress that--if passed--will assure that those who need complex rehabilitation technology will continue to have it available through Medicare outside of their competitive bidding program.

Pick a favorite, or least favorite, issue and join others who are working together to help bring about positive change. That may not eliminate all sources of frustration, but perhaps in the future there will be fewer frustrations because of those efforts.

© 2016 Michael Collins

The National Paralysis Resource Center website is supported by the Administration for Community Living (ACL), U.S. Department of Health and Human Services (HHS) as part of a financial assistance award totaling $8,700,000 with 100 percent funding by ACL/HHS. The contents are those of the author(s) and do not necessarily represent the official views of, nor an endorsement, by ACL/HHS, or the U.S. Government.