BADD, We're all in this together

People make suggestions, offer advice all the time. Much of it is unasked-for and much of it is based on partial knowledge of someone’s life, based on how the advice-giver perceives you or it seems to be based on something completely amorphous, more to do with the person dispensing the advice than the person receiving it. Just about everyone faces this at least once in a lifetime. New moms are stopped by total strangers who tell them how to parent. The self-appointed weight police are out there, too. They’re just trying to help.

Disabled people get our fair share of comments and suggestions, some of them assuming that we haven’t considered the obvious or that we’re incapable of running our own lives. Right now in the news, we’re hearing them say to cover your mouth when you cough or sneeze. Wash your hands regularly. These are things we know to do, but they’re reminders. Similarly, treating someone how you’d like to be treated is a good reminder. Do I really know what his or her life is like? How they feel?

Putting yourself in someone else’s place is a good idea. Everyone has demons that they’re battling everyday so why assume the worst and add to anyone’s plate, particularly with advice that borders on the judgmental? “Criticize things you don’t know about,” was a line from the Grandmother's Song on one of Steve Martin’s albums in the 70’s. (The next line is, “Be oblong and have your knees removed.” The two go hand-in-hand in terms of rationality.)

Not long ago, I went through several life situations at once, including dealing with my own injuries, my mother’s extended illness, those of another family member, the loss of my job and struggling through a tangled system to get care. It was a time when I found out a lot about my own courage and ingenuity. “Make it work,” took on a huge significance in everyday life.

Theres's a post appropriately called Stereotypical World in the Oddly 'Mod blog that fits in here. 

I found a book that was helpful to me and it may help others, Surviving: Coping With A Life Crisis, by psychologists, Dr Bob Montgomery & Dr Laurel Morris. One tidbit in the book resonated as the authors offered a suggestion to those of us on the receiving end, as we all are at one time or another:

"Have the courtesy to listen to those who offer you unasked-for advice, and the sense to consider if it is really helpful to you. If someone wants to give you unasked-for advice -- we call such people psychopest -- don't be afraid to assert yourself:

'Thanks for your concern and suggestions. I appreciate the fact that you care. However, when you tell me what I should do, you are putting down my ability to run my life for myself, and that annoys me. I'd like you to wait for me to ask for your advice, when I feel I need it.'"

"Carry on," a famous Tim Gunn-ism, was one of my mom's favorite sayings. ("Don't let the turkeys get you down," was another.) So I put blinders on, and now I've got my own fledgling business. I'm designing and selling my own jewelry. One focus of my line is to create pieces that are easier and more comfortable for disabled women to wear and get on and off. I'm looking for feedback on what women's specific needs are. I respect jewelry designers who are also working with our community in mind. This grew not only from my dream of creating jewelry, but my own desire for pieces that were easier to wear and not being able to find them.

It's far too fun, challenging and distracting to work on my designs and everything else connected with the business. We don't have time to worry about what uneducated people think or say. Paying the bills and meeting our personal goals are more important and real. We're making wonderful new friends online and off. We are carrying on.

I have some great blogs on My Blog List that you may want to visit.

Some helpful web sites:

Chronic Babe For Babes, who just happen to have chronic illness

But You Don't Look Sick

Invisible Illness Week Blog

Invisible Illness Conference 2008 Podcasts

These books may make your life easier, help you to feel less alone, more informed and empowered.

One woman's journey dealing with migraine headaches. An informative and actually fun read that a lot of people could relate to regardless of what illness/disability you're dealing with:

All in My Head: An Epic Quest to Cure an Unrelenting, Totally Unreasonable, and Only Slightly Enlightening Headache by Paula Kamen

Great book for couples from those who've been there:

Beyond Chaos: One Man's Journey Alongside His Chronically Ill Wife by Gregg Piburn

Very helpful with basic (handy) tips:

One-Handed in a Two-Handed World by Tommye K. Mayer

One person's pursuit of treatment for chronic back pain:

Spinal Discord: One Man's Wrenching Tale of Woe in Twenty-Four (Vertebral) Segments by Tilman Spengler

A variety of information about walking & mobility:

When Walking Fails: Mobility Problems of Adults with Chronic Conditions by Lisa Iezzoni

Great book about women with different disabilities in work situations. Very validating, work against pariah-syndrome:

Working Against Odds: Stories of Disabled Women's Work Lives by Mary Grimley Mason

I'd be interested to hear about other blogs, web sites and books that have helped you. I'm particularly interested in other disabled artists and craftspeople.

Below is a list that I first found posted years ago on the But You Don't Look Sick web site. Since then I've seen it, in various forms, circulated on different sites. Although the title suggests it's a list of the worst things to say to someone with chronic illness, I think it's some of the worst things to say to someone who is disabled or who is ill or injured in any way. Assumptions aren't usually such a good idea and say more about the person dishing it out than the one on the receiving end.

** Nothing below was written by me; I didn't write the parts in parentheses. This is one of the versions of the list. **

The major worst suggestions commonly given to someone with a chronic illness:

1) Have you tried holistic options? (many. I'll bring it back up with my doctor on my next visit, thanks.)

2) Could it be your stress? (My opinion is, it is my illness. I'll bring it up with my doctor though, thanks.)

3) Could it have to do with the altitude/weather? (I'll bring it up with my doctor...thanks.)

4) I read in {insert any generic magazine here} about a new medication. Have you heard about it? (I was on it when it came out 17 years ago. but I'll bring it up with my doctor. thank you.)

5) Have you thought about being in a trial study? (I'll ask my doctor. thanks?)

6) WOW. If I were you, I don't know what I would do. I might just kill myself. (Thanks?)

7) Have they found what is causing the problem? (no. my doctor is an idiot, thanks!)

8) Have you tried hypnosis? (I'm still sick, but when the phone rings I bark like a dog.)

9) Have you Googled your illness? (....no! thanks!)

10) Maybe you’re less able to handle pain / tolerate changes in the weather / spicy foods / wimpy / {insert ignorant comment here} than most people…. (meaning your illness/injury is not real, Suck it up! Snap out of it! Stiff upper lip! Get on that wheaties box!)

You can go to the Diary of a Goldfish blog to see who else is Blogging Against Disablism.

T-Shirt from But You Don't Look Sick