Air Travel With ALS / MND

There are rules preventing discrimination against disabled people travelling by plane. Very good rules, meaning airlines must make a real effort to transport the disabled. However, my understanding is that the obligations only apply to the extent that carrying a disabled person doesn’t endanger the safety of the plane and its passengers.

For those who don’t know me – I have ALS / MND and no use of arms, hands, legs and voice. I am PEG fed and use non-invasive ventilation twice per day. If I travelled by plane, I could not sit in a seat, even first class. I would need to stay in my powered wheelchair. I couldn’t sit on the toilet, even with assistance.

How could it work? I would need a place to securely dock my wheelchair, such that it didn’t endanger me or anyone else. For long haul, I would need to be hoisted onto a bed for personal care and would need privacy and space. Some airlines are introducing first class cabins, and the space looks about right.

Could this be quickly converted to a disabled suite?

Airlines use sophisticated revenue management software to maximise their revenue per available seat mile. It’s a low margin, capital intensive business. The availability of cabin classes, booking classes and number of seats is very carefully controlled. My powered wheelchair would probably take up the space of six seats in Economy, and of a suite or two seats in First class. I only want to pay the economy fare, because that is what I would do if I was able bodied. The first class round trip fare from London to New York is about £6,000 and £750 in economy.

First question, should airlines provide a space to secure a powered wheelchair on every flight? Ideally yes, but it’s not possible from a financial point of view. Alternatively, can there be an option to easily switch from a normal to an adapted cabin configuration?

Some considerations. Who picks up the revenue shortfall? Design. Cost of installation and maintenance. Training. Safety implications. Lithium batteries. Insurance. Turnaround time. Weight and balance. Emergency procedures. Many more.

Someone commented on Twitter that if there is space for first class suites, then there’s space for proper disabled facilities. Not that simple. Imagine areas of the plane interchangeable between full revenue earning capability and a disabled configuration.

Our Stevie, my nickname for the late Stephen Hawking, travelled in private jets in the end, because he could and because he needed to. Such an option is available to the very few.

Do we have true equal treatment now, regardless of the disability?

Ideas and comments very welcome.

Since posting this, I have been contacted by Chris Wood, who started and runs a campaign, Flying Disabled,



to bring about the change I am referring to.

Emirates First class suite

Andrew Knowlman

I am a 50-year old father of two children, married to Jane. I live in Hertfordshire, UK. I was diagnosed with Amyotrophic Lateral Sclerosis in April 2015.

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