Question of the Week: If You Could, What Work Would You Do?

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I know that many of us living with chronic illness aren't able to work right now. I also know that many "healthy" people just don't understand our inability to work because we "don't look sick." If you live with chronic illness, you know how hurtful belittling comments and attitudes of disbelief can be.

So let me set the record straight. I would rather be flipping burgers at MickeyD's, cleaning toilets or collecting garbage than stuck at home, day after day, with unrelenting chronic, severe pain and severe fatigue. Not being able to work translates into a huge loss of many things for me, including income, freedom, purpose, accomplishment and social interactions.

I think that most of us disabled by chronic illness feel the same way. We all wait for the day when medical science figures out how to successfully treat (and cure!) our illnesses so we can get back to living a normal life like everyone else does. A normal life were working is a big, important part.

Just because we can't work right now doesn't mean we don't sometimes think and dream about it. So this week, I want to hear about those thoughts and dreams when you answer this week's question in a comment here or over on the Oh My Aches and Pains! Facebook page.

Ready? Set? Go!

If your health didn't stand in the way, if money were no object and you didn't need to go back school to get more education or training, what job would you have?

My answer: I would run a non-profit organization that gives money to innovative research and social service programs that offer real solutions for people dealing with poverty, homelessness, substance abuse, physical and mental illness. I know that so much money is wasted on programs and services that don't really help and I wish I could help figure out what really does work.

(Thanks to my friend Julie who inspired me to ask all of you this question.)

My Dream Job: Record, Save & Submit

Image via Wikipedia

I am really quite excited by all of this!

Remember my recent post My Dream Job? Well it turns out that it got the attention of Nakia at the National Disability Institute. She sent me a very nice email which I want to share with you:

Hi Selena,
I just read your blog post about (your) dream job. It's a dream that many Americans with Disabilities share, and an unfortunate reality that job placement for people with disabilities is sub par.
I work for an organization called the National Disability Institute and we are holding a video contest this month where we are asking Americans with Disabilities to share their "American Dream". I think the narrative you created for that blog post would be a great entry.
The website with all the information on the contest is
http://dream.realeconomicimpact.org. You can also contact me directly if you have any questions.

Have a great day!
Nakia Matthews
National Disability Institute
1667 K Street, NW - Suite 640
Washington, DC 20006
202.296.2040

Join NDI and the Real Economic Impact team on the Web!
www.realeconomicimpact.org

So all I can think about is making a video. I have no idea where to start, but I have the whole weekend to start brainstorming...

And it goes without saying that you should think about submitting your own video too! I want you to join me in recording, saving and submitting a video to the Defining the New American Dream contest. Click the link below to get all the details:

Find out more about our video contest: Economic Empowerment-Defining the New American Dream. Grand prize: $1000 and a trip to Washington DC! Submissions due no later than August 13, 2010.

Got any ideas for my video? Let me know and I'll add them to my brainstorming list. Then watch for my video to pop up here and on YouTube before August 13th. Oh, and wish me luck!

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My Dream Job

I'm up, dressed and ready to get my day going. I've assessed that today is a good day, a good day to call in to work and see what opportunities they have for me.

"Hello, Selena," the voice on the other end of the phone cheerfully greets me. "Are you able to work today?"

"Why yes, yes I am," I reply.

"How many hours of work are you looking for today?" my liaison asks.

I pause for a moment just to reassess how I feel today. My pain level right now is about a 6, my fatigue level is about the same. I got a good night's sleep, which definitely helps. No errands or doctor's appointments today, so my schedule is free. Yeah, I can do this...

"I'd like 90 minutes of work today," I respond.

"Great. Here are the opportunities available to you today, based of course on your skills assessment:

• You can staff the Wacky Farms turkey hotline. Log into the company website and type 'Wacky Farms' into the job ID search screen. You will be directed to the call handling information tree. Simply call into the system and enter your ID whenever you are ready to take a call and a caller will be routed to you. The system will track your call time and advise you when you have reached 90 minutes.
• You can conduct Internet research for a client on moringa oleifera, also called The Miracle Tree. The client is looking for a list of links to scientific articles that reference moringa oleifera. Simply log into the company website, type 'Internet research + Miracle Tree' into the job ID search screen and use the company browser to conduct your research. Hit pause whenever you need to take a break. The system will track your research time and advise you when you have reached 90 minutes. This is step one in a multiple tiered project that includes reading the articles and write a synopsis of the information, which you are eligible to take as an assignment for the next two weeks.
• Or you can locate the best deals on the Internet for buying several different items, including an iPod Touch, a Sony 52" flat panel TV and a used Slacker Radio G2 40 station portable music player. Part of the assignment is to look for valid discount codes that can be used towards the purchase. Simply log into the company website, type 'best deals' into the job ID search screen and use the company browser to conduct your research. Hit pause whenever you need to take a break. The system will track your time and advise you when you have reached 90 minutes.

"Hmm, let me see, I think I'd like to work the Wacky Farms turkey hotline today."

"Great, Selena, let's get you started...."

Yes, this is a dream. But today I am going to ask the question, "Why can't this be a real job opportunity for people with disabilities?"

Today I am writing my blog post in support of Empowering People with Disabilities Day, a Bloggers Unite event. As the organizers state:

One in every five Americans is affected by a disability. This means that approximately 54 million people in the U.S. alone are working everyday to gain greater independence and create new possibilities for themselves.

Within the United States, the Americans with Disabilities Act (ADA) has done much to eliminate the barriers and discrimination people with disabilities have faced for so long. Yet, about three quarters of adults with disabilities are unemployed--even though most would prefer to be working. And, internet access for people with disabilities is about half of what it is for those without disabilities.

Clearly there is still a lot of work to be done if we want people with disabilities to be truly empowered!

I almost don't want to admit it, but I am one of those persons with disabilities that is unemployed. I receive Social Security Disability benefits, but my check is no where near the amount of money I used to make when I was employed. My chronic pain and chronic fatigue really limit how much I can do in a day and make me more home bound that I care to admit.

But wouldn't it be wonderful if there was an employer like the one in my fiction above that could match me to jobs that fit my skills and time availability? An employer that understood my need for flexibility in both work schedule and in my approach to getting a task done? An employer that encouraged me to work from home when I could and didn't penalize me when my health did not allow me to accept an assignment? An employer who recognized that I still had things to contribute to society even though I am disabled?

It really is a BIG dream, but today on Empowering People with Disabilities Day, I am going to allow myself to dream big because I know there are many more people out there who wish society could accommodate us more, beyond handicapped parking spaces and some limited protections in the workplace. I want to be a part of society, even if my participation takes place mostly inside my home. I want to be a valued member of society, even if I can only contribute a few hours a week to work pursuits. I want to be all that I can be, even if that looks much smaller than what most people can accomplish.

Please help empower people with disabilities and allow us to make our dreams a reality too.

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