“Coming Out” – Does My Disability = The End Of My Career?

On 22 February 2019,Peter Frampton, ranked as one the greatest rock guitarist of all time, and known well by people over 50, announced in Rolling Stone that he was making the final tour of his career due to his diagnosis with a rare and peculiar muscle wasting disease, Inclusion Body Myositis (aka IBM). Over time, he will lose the ability to play with the same brilliance he does now. Indeed, he may eventually not be able to play at all or even lift a spoon… No one knows when these limitations may happen, as it is different for each person. My heart went out to him when I read the press announcements which essentially said,

“He has a disability. His career is over.”

I then freaked out. I too have Inclusion Body Myositis and can no longer hold onto a 20-ounce bottle of water or lift my own suitcases when I travel to client sites … and my typing has slowed down. I too fall often and have over the years broken hands, toes … and last year, my back, limiting my work for six months.

Peter was diagnosed 4 years ago and discussed with his docs when he should “came out.” He decided to wait until he was at the precipice of not knowing when he would stop being able to play brilliantly.

After 16 years, I can still walk and look relatively OK, which is unusual among the 25,000+/- Americans with IBM. My concern has always been that I’d be discriminated against by younger, super-healthy potential clients. So, I’ve kept my IBM a secret, professionally. I “came out” last year when it became clear that if I didn’t alert colleagues and long-term clients, I could easily shock and frighten them: One moment we could be walking along discussing a novel idea …. a nanosecond later, I’m doing a face-plant onto the floor.

Like Peter Frampton, who is a killer guitarist in the career that expresses his soul’s passion, I’m damn good at the career I love, being a change agent with a high level of business acumen – and my credentials are impeccable (hubris included ?) But I also know that facts about employment and people with disabilities, who are often older than their bosses/clients:

In 2018 the unemployment rate for people with disabilities who are actively seeing work was 9.2%, almost three times that of people without disabilities (3.7%)

– New York Times

These figures demonstrate many poor business decisions. Here’s the broad business case to change them :

Hiring only 1 percent of the 10.7 million people with disabilities has the potential to boost the G.D.P. by an estimated $25 billion.

I feel deeply for Peter Frampton as I know how difficult the decision was to make this year’s tour his Finale: Farewell Tour. I’m not a guitarist, so:

I’m throwing down the gauntlet… As long as I can speak (when the time comes and I can no longer type, I’ll dictate), I’m going to work!

As a cross-cultural expert in body language, I’ve started informally tracking initial reactions of professionals I meet for the first time and they see my atrophied, floppy hands. As this disease progresses and I show up with a cane, or a walker, or at some point maybe in a wheelchair, it’ll be interesting to see how folks try to mask their inner reactions… Who knows, this may inspire my next book. I’m also going to increase my non-work energy toward increasing the employment of people with disabilities. First and foremost, they are people. People who bring knowledge, skills, insight, and creativity to the workplace … Secondly, they are people with disabilities.

What can you do?

1. On a personal level: Pay close attention to how your body responds when you first meet a person with “swan neck fingers” or leg braces or in a wheelchair. It is not uncommon to feel uncomfortable around someone with a debilitating disease like IBM, as over time, we’ve portrayed people with disabilities as somehow broken. Your feelings can inform you of a learned unconscious bias, one that can be changed…. the old adage, “information is power” is indeed true. Most people with disabilities are comfortable having off-line conversations about their disability and experiences. Conversing with them will provide you direct information to change this bias.
2. On a business level: start by reading Getting to Equal 2018: The Disability Inclusion Advantage, a research report produced by Accenture, AAPD, and Disability: IN that shows the performance and profit value add of hiring people with disabilities.
3. Then get involved in improving your organization’s figures at hiring and promoting people with disabilities any way you can. There are numerous actions that can take place at both grass-roots levels and senior leadership levels: Invite speakers, create discussion groups, provide your recruiting and hiring colleagues opportunities to explore how their own biases may be holding the organization back, etc..

Want to learn more about people with IBM? Watch Jerry King’s series on YouTube⤵︎

Jerry’s first IBM symptom was falling off the final step of the Great Wall of China.

Onward…