Category: Resources

View From My Wheelchair: Accessible Air Travel

If you have the ability to move, even if it is from a wheelchair to an airline seat, you may not have realized that airline travel is not an option for those individuals whose cannot make the transition.

Recently, the Muscular Dystrophy Association has been working on making changes to travel accommodation for individuals with disAbilities.  In two recent posts, they have articulated changes that would improve life for the mobility-challenged and the current challenges.  In addition, you will find useful links.

 

Accessible Air Travel Crop

“Accessible Air Travel Resource Center

Access to air travel is an important element in living life without limits. The ability to travel by air impacts many aspects of life including options for employment, education, and whether you can get back and forth from a clinical trial or a specialist’s office that is far from home.

October 2016 is an important milestone in accessible air travel as it marks the 30th Anniversary of the Air Carrier Access Act (ACAA), which requires equal access to air travelers with disabilities.  The law explicitly prohibits discrimination against travelers with disabilities, and applies to both domestic and foreign air carriers who operate in the U.S.  A few years after the law was enacted, the Department of Transportation (DOT) issued rules and regulations governing the application of the ACAA.  These rules define the rights of passengers and the requirements of the airlines under the law (Title 14 CFR Part 382).  You can read the full text of the rules here, or a summary of the rules here.

As the 30th Anniversary of the ACAA approaches, we celebrate the great strides that have been made in making air travel accessible, but are also reminded of the opportunities that remain to improve the experience for air travelers with disabilities. MDA is working with policy makers, industry, stakeholders and disabled travel advocates to support initiatives and activities to increase accessibility in air travel.”

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“Accessible Air Travel: An Important Element of Living Life Without Limits

by  | April 4, 2016

wing-221526_960_720In addition to MDA’s dedication to funding research and providing multidisciplinary clinical care, we are also passionate and committed advocates for the families we serve. Together, we advocate for increased federal funding for biomedical research; for access to clinical care, support services and equipment; and for policies and programs that help ensure access to the resources and services necessary to maximize independence and pursue a life without limits—which includes accessible air travel.  The ability to access air travel impacts many aspects of life—from the kind of job you can have, to where you can live, to whether you can access a provider or participate in a clinical trial that is far away from home.

As the 30th Anniversary of the Air Carrier Access Act (ACAA) approaches, MDA celebrates the great strides that have been made to increase air travel accessibility. In the three decades since Congress passed this landmark legislation that requires equal access to air travelers with disabilities, the law has permitted thousands of MDA families to travel more freely – something that would not have been possible before the ACAA.  MDA also appreciates the efforts that air carriers have made to help disabled passengers access air travel.

In light of the many positive changes that have taken place, however, disabled passengers continue to face significant challenges—and we recognize that there is still work to be done. MDA is working with policy makers, industry, and other stakeholders and disabled travel advocates to support increased accessibility to air travel. A few of the ways that MDA is engaged include sharing information about resources available to disabled air travelers on our Accessible Air Travel webpage, partnering with airlines to provide feedback regarding the information they provide to disabled passengers, and participating in the Transportation Security Administration’s (TSA) Disability Coalition.

MDA is also actively engaged in supporting legislation that would:

  • Study the use of in-cabin wheelchair restraint systems;
  • Identify best practices in airport accessibility;
  • Examine training policies regarding assistance for disabled air travelers; and
  • Create an advisory committee with diverse stakeholders to investigate and report to Congress on the needs of disabled passengers.

MDA particularly supports the concept of a study to examine ways that wheelchairs could be accommodated in-flight through the use of cabin wheelchair restraint systems. The potential for disabled passengers to remain in their wheelchair in-flight is important as travelers must currently transfer multiple times—even when taking a direct flight. In fact, up to five transfers per flight segment are required for many passengers—from wheelchair to aisle chair, from aisle chair to airplane seat, from airplane seat back to aisle chair, and from aisle chair back to wheelchair. Such transfers are especially challenging—or even impossible—for those living with muscle debilitating diseases, and each transfer comes with the risk of injury. The potential for a disabled traveler to remain in his or her wheelchair in-flight is imperative to study as such an approach could not only potentially enable safer travel, it could also significantly decrease damage that occurs to wheelchairs when they are placed in luggage/stowage areas for transport.

As these and other efforts regarding accessible air travel evolve, we will keep you up to date. To receive information related to accessible air travel and other policy and advocacy initiatives, register to receive MDA’s Advocacy updates here.”

View From a Wheelchair: Caretaker Burnout

Caretaker-Burnout

She stood there glaring me and then burst into tears. Sobbing, she said, “I just can’t take it anymore! I feel guilty and angry all the time. I don’t know what to do.”

Caretakers. How often do we fail to recognize the demands on their time and energy? Whether they are family members or professionals, the stressors they face are so constant that caregivers are in danger of “burn out.” First, they start feeling irritated, then frustrated, which leads to anger. Eventually, they are depressed. Sadly, they might not know what has happened to them. How can we help?

Standing in the gap, the caregiver has two roles: they assist with activities of daily living, and they are ambassadors for the disabled. Without any prompting on their part, the world will automatically engage with them in our stead. For example, yesterday, I went to Target with my caretaker. As I rolled up to the counter, I looked straight at the cashier. Ignoring me, she addressed my caretaker. I did not exist to her. My caretaker’s presence is acknowledged, and, often, I am not. This reaction from the public not only puts the disabled person in an awkward position, but it also can be disquieting for the caretaker.  How should they respond when their companion is ignored? Should they respond? Is it their role to respond?

The role of the caretaker can be confusing. One minute they are functioning as the helper, the next minute they are functioning as themselves. Imagine the stress involved in having to live two lives at once. Their time is not their own. (If you are a parent, I am sure you can relate to the fatigue, frustration, depression, or anger that can set in as a result of the stress.) Burnout is a constant peril for the caregiver.

Recently, I posted a blog about the attributes of a good caretaker (The Essential Attitudes of a Caretaker). Now, I would like to examine what healthy attitudes we, the disabled, should have about our caretakers. How can we help them?

Below is a list of the stressors that are part of the daily life of a caregiver:

  • Tasking Expectations: Often, establishing appropriate expectations for what can, should, or needs to be accomplished is overlooked or ignored.
    • One way we can help is by asking ourselves if our behavior is reasonable or if our requests are suitable. For example, recently, I ran out of homemade granola and homemade spiced nuts at the same time. Because we did not have enough ingredients to make both recipes, we went grocery shopping.  By the time we returned to the house, it was mid-afternoon. Even though I wanted to have my homemade granola for breakfast the next morning, I put aside my desire and asked myself if I were making a reasonable request. Immediately, I knew I was not.  There were other tasks, such as dinner, that needed to be accomplished that day. Therefore, I asked my caretaker if she would prefer putting off making the recipes until another day. She did. Reducing her stress is as important as keeping my stress level low.
  • Crossing Boundaries: The caretaker’s role, by its very nature, creates intimacy. However, boundaries need to be respected and enforced to be kept healthy.
    • Everyone has a right to privacy and a right to hold their own opinion.  The professional caretaker and the disabled person might form so close a bond that they infringe on each other’s personal matters.
    • If the caretaker is a family member, red flags should be everywhere.  Knowing when to back off is as important as knowing when to intervene.   Keep in mind that respect and gratitude are essential for a healthy relationship.
  • Unrealistic Goals: Expecting a particular outcome that is contrary to objective facts can lead to frustration. Watching for signs of unrealistic goals and talking about them will help.
    • Because the disabled views life through tinted glasses, they can hold unrealistic goals for themselves. They might have too high (or too low) of an expectation of what they can or should accomplish. When the caretaker confronts the sick or disabled with a contrary goal, friction is likely.
    • In addition, many caregivers believe that they can change the physical or emotional life of the disabled. While this may be true to a certain extent, the health and well-being of the sick and disabled will be determined by other factors.
  • Loss of Control: Both caregiver and the disabled will experience a loss of control.  Recognizing that there is frustration on both sides may not prevent the clashes, but, maybe, it will reduce the severity or frequency. Remember, if your caregiver is your spouse or child, they have lost their old lives, too.
    • The sick and disabled have lost a certain amount of control over their lives. Depending on the severity of the situation, the disadvantages can be severe.
    • For the caregiver, they may want to exert control where they have none. The irritation at having to subdue their drive can increase over time. The clash between caregiver and client will erupt eventually.

With increasing burden, lack of control, unrealistic goals, and the frustration, anger, and irritation, a caretaker’s ability to cope will eventually wear thin, and they will no longer be able to function effectively. Hopefully, the needs of the caretaker will be recognized as cogently as the needs of the sick and disabled. We need to take care of our caretaker.

Caregiver Burnout Quiz: https://www.caring.com/articles/caregiver-burnout-quiz