Be a light of hope this holiday season. Ignite more progress, restore more freedom, and inspire more hope for families living with neuromuscular disease.

Take to the Skies

Access to air travel should not be denied based on physical ability. Here’s what MDA is doing about it.

Every day, millions of people board flights bound for destinations across the United States and around the globe. Unfortunately, navigating sprawling airports and negotiating cramped planes makes traveling by air an uncomfortable experience for most passengers, and it can prove to be downright daunting for those with mobility challenges and other disabilities.

Many people living with diseases and conditions that limit mobility, like muscular dystrophy and ALS, avoid air travel altogether because of the constraints and shortcomings of the system, but every person should have the opportunity to travel by air, especially those who need to travel long distances for specialized medical care. MDA is working to ensure that air travel is a reality for those living with limited mobility, from business travelers to sightseers and everyone in between.

Legislative Solutions

Many people do not realize that the protections of the Americans with Disabilities Act (ADA) do not extend to air travel and that this method of transportation is governed by another law entirely. Thirty-two years ago, the Air Carrier Access Act (ACAA) was signed into law by President Ronald Reagan. The ACAA prohibits discrimination against individuals with disabilities who travel on any airline operating in the United States. The act’s passage laid the groundwork for the ADA four years later. While the ACAA was a good start toward the goal of equalizing access to air travel, the current system still leaves much to be desired for travelers with disabilities.

MDA often partners with other organizations to boost our advocacy efforts, and the issue of accessible air travel is no exception. By joining forces with other groups representing disability communities, we have been able to amplify the voices of travelers with disabilities before Congress, the Federal Aviation Administration (FAA) and the airline industry. As Congress considers legislation regarding the FAA, MDA has taken a seat at the table to advocate for provisions that would make air travel easier for people living with neuromuscular diseases. One of these measures would create a diverse advisory committee that would include individuals from the disability community to investigate and report on the needs of all passengers with disabilities. If created, this committee would provide the FAA with valuable insight on the real-world travel requirements and constraints of people with disabilities. This type of direct input from the disability community would help shape policy going forward, and MDA will continue to urge Congress to pass this legislation.

MDA is also working on a more specific initiative to lay the groundwork for longer-term changes to the aviation industry that would make it easier to travel with assistive devices. Traveling with manual or power wheelchairs can present many challenges to passengers, especially when the wheelchair must be checked in the airplane baggage compartment. Recent accounts of expensive, specialized mobility devices being nearly destroyed in the baggage handling process have no doubt discouraged many people from boarding an airplane. No one wants to find that their checked item has been damaged in flight, but when that item is an absolute necessity, like a wheelchair, the consequences can be life altering until the problem is resolved.

MDA is working with members of Congress on an initiative that would require the FAA to undertake a study on the use of in-cabin wheelchair restraints. If people could travel in their wheelchairs on the plane, instead of being required to check them, damages to equipment would likely be minimized and air travel would become a more pleasant experience. While the process of conducting a study and evaluating results may take some time, MDA continues to work toward this long-term goal.

Finding Our Voice

There is recourse for passengers when travel plans go awry, including damage to wheelchairs and other assistive equipment, but many people either don’t know what to do or don’t feel that the process will meaningfully fix the problem. MDA created the Accessible Air Travel Resource Center to help people with neuromuscular disease navigate the current travel landscape, but there is significant room for improvement on the part of the government and airlines.

In a 2016 survey of more than 2,000 people living with neuromuscular disease, more than 70 percent indicated that they have experienced problems with accessibility while traveling by air, and 40 percent said their mobility device was damaged during travel. These numbers are unsettling alone, but our concerns are further compounded by the fact that fewer than 4 percent had ever filed a complaint with the Department of Transportation and more than half of respondents did not even know they could file a complaint about the problems they experienced.

We were disappointed to see these results, but we were not surprised by them. MDA has and will continue to use the findings of this survey as a powerful tool to advocate for positive changes to the aviation industry in our work with the government and airlines.

However, our advocacy efforts are only as powerful as the voice of our community. As MDA works toward our goal of making the skies friendly for all travelers, we depend on the individuals and families we represent to help us make our case to members of Congress, the Department of Transportation and air carriers. Start by visiting MDA’s Advocacy page to get up to speed on the latest developments and find out how to advocate for accessible air travel and a number of other issues. When we work together, the sky’s the limit.

Know Your Rights

Because of the Air Carrier Access Act (ACAA):

  • You can’t be refused a plane ticket because of a disability.
  • You can’t be required to sit in a certain seat or area of the plane because you have a disability.
  • You are entitled to assistance boarding and making connections.

For more information, visit the U.S. Department of Transportation.

What MDA Families Say About Air Travel

Significant accessibility issues identified as problematic while traveling:

  • Education of in-flight crew and airport employees
  • Wheelchair damage
  • Bathroom and aisle size

More than 2/3 indicated they would opt to stay in their wheelchair in flight if given the option

More than 1/2 have experienced significant delays for requested disability-related assistance when traveling by air

More than 40 percent of those flying with a wheelchair or scooter indicated their device was damaged in flight

Be an Advocate

Together we can ensure that the voice of our community is heard. That is why we ask you to join MDA’s network of advocates, families, volunteers and partners. Visit MDA’s Advocacy page and click on “Become an Advocate.”

Brittany Johnson Hernandez became MDA’s director of advocacy in July 2018. She is a professional public health advocate who previously served as the principal transportation staffer for a member of the U.S. House Committee on Transportation.

MDA Resource Center: We’re Here For You

Our trained specialists are here to provide one-on-one support for every part of your journey. Send a message below or call us at 1-833-ASK-MDA1 (1-833-275-6321). If you live outside the U.S., we may be able to connect you to muscular dystrophy groups in your area, but MDA programs are only available in the U.S.

Request Information