Lee: Learning about disability etiquette
Editor's note: This is first of a two-part series to honor October Disability Awareness Month.
Here's a shout out to those courageous people who struggle with disability. They work hard just to get out of bed, take a shower and get dressed. Every day there are countless frustrations and difficulties, often with depression, isolation or chronic pain.
Their disability might be "invisible," which is a term we use for those of us who don't use a cane, walker or wheelchair (preferably called "chair").
I have one of the invisible illnesses, multiple sclerosis or MS. I was diagnosed in 1993, when treatment options were still very limited. Now the development of medications has slowed the progression of the disease for most of us, but there is still no cure. I have found a purpose in volunteering my time with the National MS Society, working especially with those newly diagnosed, by sharing information and offering advice and counsel.
My personal and online experiences with hundreds of people with MS have given me perspective on the need for public education about our interactions with those having a chronic illness or disability.
It is vital for each of us to understand how to speak with a person who has just told you they have chronic illness or disability. The first rule is that every person's symptoms are individual; no two are alike. The following are a few examples of what many of us encounter when we tell someone about our diagnosis:
• It feels dismissive to hear, "Oh, but you look so good," however well intentioned. No one knows what the person is feeling inside or how long it took to get ready for the public. A working person may be running on adrenaline, to the detriment of their health. Or there may be cognitive issues.
• When hearing about a person's symptom, such as fatigue, a common response is: "I know how you feel." You cannot know the nature and extent of the mental and physical fatigue (like the flu for those with MS), that your friend is experiencing.
• Please never harass or "shoot arrows" at a person for using a handicap placard. The person may look perfectly healthy but have invisible symptoms. A physician has determined the person's need and eligibility for the placard, and having fewer steps to walk is extremely helpful.
• It is polite to speak directly to a person in a chair by bending or sitting down, rather than talking to the standing person they may be with. Appearing to speak "about" them is humiliating.
• We need to feel as independent as possible, so don't rush to help someone or treat them as "less than" before understanding the situation. But please do open doors frequently, for everyone.
• Please save your medical advice or cures/treatments you've heard about. The disabled spend countless hours speaking with their medical providers, exploring answers to their particular illness.
• Definitely avoid laughing at or making fun of a person who may appear intoxicated. This happened to me in downtown Portland 20 years ago, and I will never forget the humiliation. (I was not intoxicated!)
• When learning of your friend's recent diagnosis, it is most helpful to simply offer your condolences. It is best not to offer: "My friend's partner's brother has (disease) and he is doing quite well." While this might seem to be an understanding response, it isn't helpful and dilutes the empathy you really wish to convey.
Or, saying, "He is doing quite well," doesn't provide hope and can do the opposite. It feels like a competition. And most chronic disease symptoms are invisible, so there is no way to know how the brother is doing.
• "Are you taking medications?" Many people are opposed to meds and others are enthusiastic. Avoid that quagmire. Wait for it to come up, if it does, even though there may be very encouraging treatments available.
• "I heard that (blank) causes (disease)." (Fill in the blanks for things like diet soda, underarm deodorant etc.) These fad medical "explanations" are inaccurate. For example, MS is likely caused by a combination of viral and autoimmune triggers with a genetic and probably a geographic component.
In spite of my comments, disabled folks do understand that our friends mean well when saying these "pet peeves," and we still value your continued friendship. Part 2 offers suggested responses to a person who says, "I have a chronic illness."
Laurie N. Lee was a Portland estate-planning attorney who retired in 2006 because of her disability. She has been a member of the National MS Society, Oregon and SW Washington Chapter, serving on its board of trustees for 12 years, co-captain of the Portland Walk MS "Step-up Business and Professional Team" and was recently honored by the National MS Society for over 18 years of volunteer service and advocacy.
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