Tuesday, December 15, 2009

The Pied Piper of Rheumatoid Arthritis

I met our next RA warrior six years ago when I had to teach her how to start a commercial dishwasher. Ginger and I started the freak parade soon after, an informal rag tag mix of people with auto immune disease and other challenges. The woman holds a Bachelors in Music Education and is a district music teacher in addition to private cello teacher. Both a daughter of a woman with RA and RA patient herself, Ginger is one of very few people I am proud to call best friend.

Favorite thing to do:

I really like to sleep. But other than that, I enjoy hanging out with my friends/fellow teachers. We have a great time together.

Favorite pick up line:

Yeah man is NOT a pick up line that works. I just want that to be clear.

How would you classify your disability?

Physical/medical I guess. JRA affects life in different ways on different days. For example, the fact that my immune system is supressed makes my job difficult because I am exposed to so many germs and because my job with kids is so hands-on (if I didn't go move their fingers, they would sound even more like dying cats than they already do). So in that respect I guess it's medical. I have been on so many antibiotics in the last year that I've grown to hate them. Also, my kids think I'm a germaphobe because I have a rule in my classroom that "if it goes in your mouth, it goes in the trash" and I make kids wash their hands every time they cough or sneeze. Also, I constantly smell like hand sanitizer, never touch my face, and wash my hands after every single class (at least).

In the physical respect...if the arthritis happens to be flaring (which could be any time my body feels like it, any time the weather gets cold, etc.) then it's hard for me to perform normal everyday tasks like getting dressed, driving, cooking, writing, playing instruments (this is a big one in my job). Since my job entails traveling to up to four different schools a day and I don't have a classroom, it's much more of a physically demanding job than it is for most teachers. I have to be outside in the cold; I have to set up and tear down rooms by moving furniture and setting up chairs and stands; I have to carry my materials with me to every class, either from my office or from my car; I spend a fair amount of time repairing instruments and transporting them (basses are heavy, folks); and I play up to five different instruments in a day. So, that makes work hard. I also live upstairs above my landlord's garage, so in the event that I'm having a really bad flare I have Papa John's, Jimmy John's, and the Chinese place on speed dial (also, did you know that Dillon's will deliver groceries and Walgreens will deliver prescriptions? And your gay boyfriend will often deliver dinner as well? Handy things to know about). I also have a toilet seat extender handy for days like that and keep miultiple heating pads in my house and office. If I feel that I absolutely have to go to school during a flare I conduct/teach from a stool rather than stand.

Plenty of days, though, I feel just fine and am more than capable of say, reupholstering furniture, putting up Christmas decorations, going camping, or just generally kicking ass.

Does your school/boss/job administration help you to achieve your goals at work/school?

Yes-in education, they actually force planning and goals down your throat. However, despite many requests to do something about my lack of classroom (which has a more far-reaching impact than just my own physical health-namely, the educational well-being of my students) I still don't have one. With budget cuts, I'll be lucky to have a job next year so for now I'm willing to put up with this.

Is your disability on file at your job/school? If so, how did you break the news? If not, do you plan to do so?

Not officially. But I teach in a relatively small community that is very tight-knit, and everyone knows everything about everyone else. My colleagues all know about my arthritis and are actually very sensitive and helpful, and my administration knows because I've had to call in arthritic a few times. I don't know that I ever officially broke the news; I interviewed with a brace on my left wrist and have always been pretty open about it.

Would you classify yourself as in the closet about your disability?

No. I joke about it a lot, even with my kids. When my elementary kids whine about standing for half an hour it's easy for me to get them to stop by saying "hey, my body is eating my knees as we speak and I'm still standing. You'll live." Also, when I play or lead them in stretching things pop a lot and it sometimes freaks them out-I have to say something like, "sorry, my body is make of rice krispies, it snaps crackles and pops." It's also a good teaching moment for the kids-people with physical disabilities/diseases can do really cool things. And I am the coolest.

What are your professional/study plans for the future?

I'd eventually like to go back for my master's. I don't know how long I'll stay in this job before deciding to teach somewhere else where I don't have to travel between so many schools and do so much physical labor, but I've put so much in and built the program so much that I think another two years at least in my current job are warranted.

If you were to give advice to a young person with a disability, what would you say

Do what you love, even if people tell you it's a bad idea. Life is too short not to do what you love.

Ginger's "Five things you want to do before you die".

1. Attend the entire Burning Man Festival.
2. Climb Tikaboo Peak in Nevada and watch the Area 51 runway lights come on.
3. Get married and have kids.
4. Run for and serve in at least one political office.
5. Travel all of Route 66.

I hope she destroys all the evidence before she runs for office

Sunday, December 13, 2009

We are your friends,your neighbors, your ...toy reviewers

Introduction: In an effort to show the human face of disability in the workforce, here is the first edition. I am extremely pumped to share the courage and beauty of my friends, coworkers, and comrades. I hope you enjoy their essence as much I do.

Meet Essin'Em

I met Essin' Em at hippie school in 5th grade. A pioneer since grade school, she has never backed down for a challenge. A 16 year old graduate of high school, she now holds a BA in sociology and German as well as a M.Ed in Human Sexuality Education. Essin ' Em is now making important inroads into the very taboo area of disability and sexuality as writer, publicist and sex educator.

Favorite thing to do: Cuddling with my kitties (and partner) in bed with a good book and cuppa tea.

Favorite pick up line: So, um...I have some sex toys I need to review. Want to help me try them out?

How would you classify your disability? (visual, emotional, medical, physical etc): Frustrating. Snarkiness aside, physical.

Are you doing what you planned to do in school? Yes and no. I don't make 100% of my living from sexuality education, but am getting to do it.

7. Does your school/boss/job administration help you to achieve your goals at work/school? If not, please explain how they could help you better. I don't have a boss right now, as I do freelance and consultant work. However, my school definitely did not help - I was a bit of the black sheep, as instead of sex therapy or working at Planned Parenthood, I wanted work with "alternative" communities with sexuality; the dis/ability community, the queer community, the kink community, the poly-community, etc.

Are you doing something you like? If not, what would be your ideal job/study? Yes, although not full time. My ideal job would be teaching in regards to sexuality all the time, whether through a university, or being able to consult full time.

Would you classify yourself as in the closet about your disability? Why or why are you not? Definitely not in the closet. I feel that by showing that people with different ability levels are just as competent as traditionally able bodied people is the only way to change opinions. Also, I use a handicapped placard often, and walk with a cane some of the time, which automatically outs me.

Do you think disability discrimination exists and if so in what capacity/way? It definitely does. From having to argue with corporate in order to have a chair at a front desk position to the amount of difficulty in getting a handicap placard or getting approved to get disability assistance, there is definitely still discrimination against those with different abilities.

If there were one thing you could change in your native country regarding disability and employment what would it be: Require that all public transportation be publicly accessible, all sidewalks have ramp access, and have handicap placards transfer state to state.

Have you worked/studied/lived abroad? If so, how does this compare to your home country: Yes. Germany was much more accessible, both physically and as far as government benefits/access than the US is.

List five things you want to do before you die:

Live abroad again (this time, with my partner)
Get my doctorate
Own a house
Become a household name synonymous with Sexuality Education
Establish my own company

I want to end with Essin'Em's advice to young people.
Don't be afraid to claim your dis/ability as part of your identity. There is no shame in being who you are. On the same note, don't become your dis/ability - it's only PART of who you are.