The Ethical Rule of People and Profit
I’d like to think I’m easy-going when it comes to interactions that affect my Parkinson’s. In fact, the “whatever you need, I’m easy” response is my go-to when it comes to anyone doing something for Parkinson's me.
Even when I’m getting a haircut! “I may be shaking, but I’m OK. That’s my Parkinson’s. It doesn’t hurt. Do your thing!”
What makes me angry
You could accurately say I’m looking to purr like a cat more often than bark like an “on-guard” dog. Of course, there are situations where Parkinson’s requires a rule to keep my “purr” on. For instance, bradykinesia.
Other situations bring the anxiety and temper on. When it comes, I need to minimize the damage as best as possible. For instance, dealing with multiple bad connections with call centers. I have a rule for that, too.
However, few antagonists to the Parkinson’s world bring me to a level of “GRRR” quite like seeing people prey on Parkie wallets and emotions.
Rules for businesses
If you’re going to sell me anything for my Parkinson’s, please care more about my well-being than living the good life on the spoils of my malady. Have as much stake in the game as people with Parkinson’s.
Where applicable, submit your product to research, testing, and science. Personal claims don’t count. Going through the Food and Drug Administration’s guidelines and an Institutional Review Board does count.
Ask yourself, “Is it ethically sound to take government dollars for what I’m advertising?” Review the Code of Ethics for the National Alliance for Direct Support Professionals.
Not all products are bad
Medications cost money because they take money to create. Research, testing, development, and advertising are expensive. So is insurance.
I believe anyone who submits to the drug development and approval process is taking the time to be ethically sound. Even if medical costs can be high.
If an organization sells t-shirts to advertise its efforts for a cause while working for the cure, I often support them. Especially if they use a majority of donations for the cure.
I have no issue with patients reviewing products or organizations when someone compensates them. So long as they state it and use it personally. Sometimes this is the only way to spread the word. That said, the rule demands all 3 conditions apply.
If someone writes a biography to raise awareness or help others live better, I’ll pay for it if it resonates with me. I know some people have issues with this. Personally, I don’t see any compensation outweighing the effects of dopamine loss. Besides, for some people with disabilities, pay is essential to survive.
Look out for red flags
A red flag does not mean it’s automatically bad. It just means you need to step back and think about it. Look first at the credentials.
For example, I’m an advocate with a condition. I’m not a medical professional who treats the condition. I’m not a social worker, but I academically advise college students. I pull from my experiences and those of fellow professionals who educated me.
I help people with a myriad of obstacles that are inhibiting their progress. Sometimes I’m enough; other times people need a professional recommendation.
Think about the credendtials
My credentials allow me to share what worked for me. I can also share how symptoms and side effects feel. I can’t speak about performing research or diagnosing our shared nemesis.
I can’t prescribe you meds, nor can I say what treatment is best for you. However, I can list available options with pros and cons. I can empathize with you and narrate my learned experience. This is a long way from selling magic beans for a 1-stop cure-all.
Mostly, like author Laurence Gonzales, I can advocate for mental well-being and spotlight individuals' resilience. My biographical information informs my beliefs and writing - I am a 50-year-old white, married American middle-class male. I have a master’s degree and stage 2 young-onset Parkinson’s disease.
We need to ponder someone's credentials when it comes to how they interact with our condition. When we read the diverse and unique voices of Parkinson's, we need to inspect them critically to trust them. The same is true of businesses and organizations.
Tips for avoiding scams
The CDC says that medical tourism is risky.1 Think of the TV show Botched. Cheaper now could cost more later. A provider might perform procedures that don't meet your standards. Travel might irritate your recovery. In short, buyer beware. Talk to your healthcare providers before jumping into anything.
Any website that prescribes miracle cures is suspect. There is no cure for Parkinson’s yet (we are making progress). ParkinsonsDisease.net is fact-checked to provide reputable information. Stick with credentialed sources.
Fake news is everywhere. There is a danger in believing in magical cures or attacking legit businesses and processes. My friend has a child with autism. Her desire to learn to parent them meant sludging through scams to find resources.
She was soon was irate at the nonsense and fear-mongering. I understand people have the freedom to hold contradictory beliefs and to make bank; I don’t condone getting rich on snake oil.
We’ve all seen "ambulance chasers" ads. Recently, I removed 8 ads for settlements from one of these court cases in 10 minutes. Despite this, I still had to delete more ads a week later! It takes time to do the “hide ad” process. How much money is there in filing legal claims that institutions are advertising?
It’s essential that people with disabilities have money to live, and yes, complex forms need help from the right people. But is the help more about helping or enriching the “legal savior?” Are these people finding a cure or just showing both parties the money (while Parkies remain diagnosed)?
Do these people redirecting my forms feel like they've changed a life or just paid their bills by shuffling paper? This ad wasn’t even for official disability filing which is a difficult, though necessary, process!
Henry David Thoreau said, “If I knew for a certainty that a man was coming to my house with the conscious design of doing me good, I should run for my life.”
I don't want to be that jaded about all help, but scammers make me growl. Hence, a new rule: Say no to them and purr more.
Which of the following caffeinated beverages do you regularly consume?