Episode 18 - Alan Jackson's Diagnosis

TRANSCRIPT OF “ALAN JACKSON’S DIAGNOSIS”

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MALE VO [00:03]
This is Bad Attitudes.

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LAURA [00:20]

Hello friends and strangers! Welcome to another episode of Bad Attitudes: An Uninspiring Podcast about Disability. I’m your host, Laura.

Recently, country music superstar Alan Jackson revealed his diagnosis of Charcot-Marie-Tooth disease. Let’s talk about it.

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[01:35]
As always, I want to remind you that disability is not a monolith. Although some aspects are universal, my experience as a disabled person is going to be different from the experiences of other disabled people. I am one voice for the disabled community, but I am not the only voice.

On September 28, 2021, in an interview with TODAY, country music superstar Alan Jackson revealed a diagnosis of Charcot-Marie-Tooth disease, a degenerative nerve condition. We learned that he was actually diagnosed 10 years ago, and that he inherited the disease from his father.

Coincidentally, October is CMT awareness month in the UK, and I was lucky that Lizzy Bunton, who I follow on Instagram, shared some helpful information around the time I was planning this episode. I’ll leave a link to Lizzy’s Instagram account in the episode description so you can go follow her. Tell her I sent you!

Despite the name, Charcot-Marie-Tooth has nothing to do with teeth. CMT affects the peripheral nerves, which are the nerves that go to the arms, legs, hands, and feet. Other areas may be affected, as well. It is one of the most common inherited neurological disorders and affects approximately 1 in 2500 people. Some people may be unaware they have CMT or are a carrier, and CMT is rare compared to other disabilities.

Because it affects the nerves, CMT prevents messages from the brain from properly reaching the muscles connected to the peripheral nerves. This can cause muscle wasting, loss of sensation, weakness, fatigue, and gradual loss of abilities like walking or using your hands. This also depends on the type and severity of CMT.

Something you might notice in a person with CMT is that they, quote, “walk funny,” such as with a foot drop. My family and I saw Alan Jackson perform in late 2019 and noticed he was limping. We all thought he pulled a muscle or injured his knee; in retrospect, this was obviously a sign of his CMT.

There are multiple types of CMT, according to the Charcot-Marie-Tooth Association in the US. Type 1 affects the myelin sheath of the nerve, and accounts for about 55 percent of CMT cases. Type 2 affects the axon, or center, of the nerve, and people with Type 2 have a wider age range for onset of symptoms, and more variation in the degree of disability.

Type 3 is also known as Dejerine-Sottas syndrome, but these terms are rarely used anymore because they were coined before the genetic causes of CMT were identified. Type 3 and its sub-types are now being renamed to more accurately reflect the genetic basis of CMT. 

Type 4 is rare, making up about 5 percent of CMT cases in the United States. Severity ranges from mild to severe, and people with Type 4 may experience symptoms in other areas of the body such as cataracts or deafness.

Types 1, 2, and 4 each have several sub-types.

There is currently no cure or treatment for CMT. Physical therapy and exercise can help strengthen muscles, particularly those that aren’t affected. Occupational therapy can help people with CMT maintain independence. And rest is essential for those with CMT, and painkillers may be needed.

Here are things we don’t know, as related to Alan Jackson’s CMT diagnosis specifically. We don’t know (or at least, I don’t know) what type of CMT he has. I would hazard a guess that he has a less severe type of CMT as he has been able to keep it under wraps for 10 years, and decided to reveal it because the symptoms were becoming noticeable.

We don’t know if any of his children are affected by CMT. Jackson revealed that his grandmother, father, and one of his sisters were diagnosed, but there was no apparent mention of his daughters. I would think if they have been diagnosed, he would not reveal that information without their consent because he seems like a good dad.

I can’t say with certainty that Alan Jackson would have revealed his diagnosis if the symptoms and effects weren’t becoming noticeable to outsiders. Even though he’s a public figure, he has every right to maintain privacy concerning his medical history, and CMT is a medical condition. In addition to having trouble walking, he mentioned balance issues, and simply being more uncomfortable standing on stage behind a microphone. Having seen him perform more times than just the one concert in 2019, I feel confident saying Jackson is a man who is used to feeling comfortable behind a microphone. I mean, he’s only been doing it for the better part of 40 years.

But Jackson’s revelation is important for a couple of reasons. One, it has brought some attention to Charcot-Marie-Tooth disease, of which I, for one, was unaware.

Secondly, it reminds non-disabled people that disability can come for anyone at any time. Whether Jackson himself identifies as disabled, I can’t say. But based on the trajectory of the disease, if he is losing his ability to walk, he will likely become disabled at some point in the future. And while I don’t wish disability on anyone, seeing it come to someone who is rich and famous and has all the apparent trappings of a successful life is a powerful reminder to those who think it can never come for them. Even more especially because in addition to being rich and famous, Alan Jackson is a straight, cis, white man of a certain age, a literal embodiment of privilege.

Disability doesn’t care about gender or sexual orientation or skin color or wealth or notoriety. 

The average non-disabled person is one accident, illness, or unknown genetic anomaly away from disability.

In all likelihood, Jackson probably knew what lay ahead of him. If he saw his grandmother and father dealing with CMT, as well as his sister, he had to have some inkling of what might lay in his future. But what if you aren’t lucky enough to be aware ahead of time? What if both parents are asymptomatic carriers? What if, like me, your disability is the result of a genetic mutation?

Jackson had the chance to prepare. I would guess his family took advantage of genetic testing if and when they were able, either for him and his siblings or for their children.

Given his resources, I’m sure he is well taken care of. I would imagine he is under the care of the best doctors, the best therapists, and the best pharmaceuticals. But, again, that’s privilege. There are many more people who don’t have those resources and who have to fight for access to needed medical equipment. If Jackson needs, for example, a wheelchair at some point, do you think he’s going to have to go through much struggle to access one? Do you think he will have to fight with insurance companies or scrape together enough money to pay out of pocket? A custom wheelchair ain’t cheap, friends.

It’s important that we aren’t fooled into thinking that his story is representative of all the stories. I say it in every episode: Disability is not a monolith. Just because he has CMT doesn’t mean he represents every person who has CMT. Yes, he has brought a spotlight to the disease, and hopefully he’ll continue to be representative of that community. 

I admit, I have high hopes for Mr. Jackson after revealing his diagnosis. I hope he becomes an advocate for the disabled community. I hope he acknowledges and speaks up about medical inequality. I hope that he says, “Look at all that I have and all that I have done, and I am part of the disabled community!”

Just remember, if it can happen to him, it can happen to you. And while I don’t wish disability on anyone, I would be lying if I said I wouldn’t like to be around when Karma comes calling on certain people. 

Thanks for listening, and I’ll talk to you in the next one.

[10:21]
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