Do you walk on eggshells around people with chronic illness or disabilities? If so, you are not alone.

Maybe you’re a little uncomfortable — you don’t know quite what to say and don’t want to stick your foot in your mouth. You want to ask questions but don’t want to pry. In our “politically correct” world, eggshells are all over the place.

Most literature about chronic illness informs us that stress can aggravate symptoms and cause relapses, and a lot of us can attest to that fact. Avoiding undue stress is a positive thing. However, we cannot divorce ourselves from planet earth and the reality of every day life. Taking the concept of avoiding stress too far, especially within the family, can result in pent-up resentment by all concerned.

Most people who have a chronic illness or disability are functioning members of society and integral members of family life. Rather than avoiding that person or avoiding the problem altogether, why not approach them as you would anybody else?

Adults with chronic illness or disabilities want… and need… to be included in important issues, even potentially negative ones. Family and friends, or even co-workers who overprotect can end up causing more harm than good, adding to their own stress levels in the process. It is a vicious cycle that raises tensions and prevents functional problem solving. Good intentions don’t always equal good outcome. Life is fraught with highs and lows and it is folly to try to protect someone from life itself.

Perhaps you are the one with a chronic illness or disability, going out of your way to paint a rosy picture and keep your problems to yourself. We all want to put our best foot forward and, unquestionably, that’s as it should be. But taken to the extreme, it sends the wrong message and can lead to misunderstandings and unexpressed anger. Clearing the air about problems as they arise will ease tension in the long run.

Eggshells be damned. No more hiding. Rather than allowing chronic illness or disability come between you, make a pact to face it honestly and speak freely. Empowerment is gained through being part of the solution rather than part of the problem. We’re all just people.

Writer Ann Pietrangelo embraces the concept of personal responsibility for health and wellness. As a person living with multiple sclerosis, she combines a healthy lifestyle and education with modern medicine, and seeks to provide information and support to others. She is a regular contributor to Care2.com’s Reform Health Policy blog in Causes. Follow on Twitter @AnnPietrangelo.

Sometimes it’s the little things that make a big difference in quality of life and maintaining independence.

If you have relapsing/remitting multiple sclerosis, as I do, it’s easy to overlook simple things that can make life easier when in relapse. Since my own diagnosis in 2004, I have come to appreciate some simple household helpers that assist me in managing daily life with MS.

1. Tall Stool for Kitchen Work: An inexpensive solution to a big problem. If standing at the kitchen counter for any length of time is a problem, a tall stool is just the right height for kitchen duty. Get in the habit of gathering together everything you’ll need in one spot rather than making multiple trips around the kitchen. Grab the stool, have a seat and enjoy your kitchen again. Make sure the stool has firm support and no arms so you can easily maneuver. You don’t need to buy anything fancy or go to a specialty store — any tall stool will do.

2. Mobility Aids: An adjustable folding cane can be tucked away in a large purse, suitcase, or car, out of sight and out of mind until you need it. There is even a cane that folds out into a stool! They are available in lots of styles and colors, too. If you need them, lightweight, folding wheelchairs and walkers are excellent devices for people who only need them occasionally.

3. Shower Chair: If you have difficulty with balance and strength, the shower can be a little intimidating, but a small, sturdy shower chair can give you back your confidence, and can be easily moved aside when not needed. Grab bars can also boost safety. While you are thinking about the bathroom, you may want to consider investing in a blow dryer stand to relieve your uncooperative arms.

4. Handicapped Parking Placard: People with multiple sclerosis often appear healthy and strong even though they have difficulty walking for any length of time. Problems with fatigue, stamina, balance, and coordination can interfere with daily activities. If you have difficulty walking or standing for more than a few minutes, you might want to consider applying for a placard. The ability to park close to a place of business or shopping center could make all the difference in the world when it comes to maintaining a sense of independence. The information you need, along with the application, are available online from the Department of Motor Vehicles in your state.

5. Sensible Shoes: Sensible shoes don’t have to be ugly shoes. High heels and pointed toes aren’t very sexy if you teeter around on the brink of disaster all day. Opt for shoes with a low heel and sturdy construction. Shoes that have no support at the heel and do not stay put when you walk can cause trips and falls. Even flip flops can cause trouble if you have difficulty walking. For hanging around the house, lightweight slippers with flexible soles that move with your foot are comfortable and safe.

6. Cooling Products: Heat and humidity makes it even more difficult for already damaged nerve fibers to transmit electrical impulses, resulting in an exaggeration of MS symptoms (pseudo-exacerbation), which may include fatigue, dizziness, and extreme weakness. A simple rotating fan can make a big difference. Information on Cooling Programs: Multiple Sclerosis Foundation: Cooling Program, Multiple Sclerosis Association of America: Cooling Equipment Distribution Program, National Multiple Sclerosis Society: Cooling Product Information and Assistance.

7. Visual Aids: Most drug stores and department stores have magnifying reader glasses at various strengths. Magnifying screens, good lighting, and a host of options for your computer help people with visual disturbances.

8. Handy Helpers Around the House: Devices to help you reach reach things in high places, gripping tools for opening jars, and even pens made for people who have trouble with their grip make little chores easy again.

9. Yoga/Wii: Yoga is often recommended for people with MS and there are programs designed specifically with MS in mind, including exercises that can be done from a wheelchair. Wii is more than just a game and Wii Fit includes some yoga positions and a series of exercises to improve your balance and coordination. With no need to leave home, you can progress at your own pace.

10. Stress Reducers: Your spirit needs some TLC, too. Try using candles and essential oils with calming scents like lavender and sandlewood as you go about your household chores. Water fountains bring the soothing sounds of a stream or brook inside your home. Meditation and deep breathing exercises can rejuvenate in just minutes a day. Don’t neglect the mind/body connection.

Writer Ann Pietrangelo embraces the concept of personal responsibility for health and wellness. As a person living with multiple sclerosis, she combines a healthy lifestyle and education with modern medicine, and seeks to provide information and support to others. She is a regular contributor to Care2.com’s Reform Health Policy blog in Causes. Follow on Twitter @AnnPietrangelo.

One of the most frustrating aspects of life with chronic illness is the constant state of flux. It is true of all types of multiple sclerosis, and relapsing/remitting MS certainly lives up to the name.

The fact that many of these on-again off-again symptoms are invisible to observers makes it a particularly difficult series of emotional adjustments, especially if you are prone to worry about what other people think.

It’s hard to be taken seriously when people see you looking the very picture of health one day and claiming to be the opposite the next. It probably doesn’t help their perceptions when we go to great lengths to hide the truth.

We hear a lot about maintaining a positive attitude in the face of adversity, and most of us work at keeping our complaints to a minimum and putting on our best face for all the world to see. Most of the time this works in our own favor, but occasionally the challenges of life with chronic illness loom so large as to become overwhelming.

Since receiving the diagnosis of relapsing/remitting MS in early 2004 I have, for the most part, managed to have more positive days than not. The not-so-positive days have been largely hidden from view, revealed only to a few friends and the closest of family members. Let’s face it, nobody wants to be considered a complainer.

I don’t want to be seen in a negative light, but as a positive person who lends kinship and support to others through my writing on the subject of MS and chronic illness. On the other hand, the bad days we all experience cannot be avoided. Addressing them openly and honestly doesn’t make me a negative person; it makes me human.

That was my thought process recently when I tentatively posted brief snippets about my latest MS relapse on Facebook and Twitter. Not complaints and not written in anger, they were instead brief and honest snapshots from a life altered by MS.

The response took me by surprise. Friends, acquaintances, and complete strangers sent me emails of support and understanding. Those who also live with MS or other chronic illness were, of course, able to see beyond the few words I’d written — I had struck a nerve. As far as I could tell, no one saw it as complaining or that I was passing on negativity. It was taken for nothing more than the truth that it was.

I have no less faith in the power of a positive outlook on life, but more faith in the people around me to accept the hard truth once in awhile. I’m not saying that anyone needs a play-by-play of our lives any more than we need one of theirs. What and how much of ourselves we choose to share is very much a matter of personal preference.

In a previous article on the topic of positive thinking, I wrote, “I wonder if, by keeping my bad moments private, I have contributed to the pressure to keep up appearances and if by putting my best face forward, I’ve given the impression that I’m always full of sunshine and roses… let it be known now… I have moments when no matter how hard I try, I cannot fight the frustration. So I acknowledge it, deal with it, and purge it. It’s not particularly pleasant, so I generally get myself back on track rather quickly. It is what it is.”

I would like to add something more to that statement: There is no need to keep these feelings to yourself. It is possible to share the bad as well as the good and to do it without wallowing or complaining. It is simply stating the facts of life. If they can’t handle it, that’s not your problem, but people just might surprise you.

Writer Ann Pietrangelo embraces the concept of personal responsibility for health and wellness. As a person living with multiple sclerosis, she combines a healthy lifestyle and education with modern medicine, and seeks to provide information and support to others. She is a regular contributor to Care2.com’s Reform Health Policy blog in Causes. Follow on Twitter @AnnPietrangelo.

October is Disability Employment Awareness Month. Let’s look at blogs out there by women about disability and work! Patricia E. Bauer hits right on target as usual: President urges employers to welcome workers with disabilities. I’m all for that. Here’s a quote from President Obama’s Proclamation:

In the past half-century, we have made great strides toward providing equal employment opportunities in America, but much work remains to be done. As part of that continuing effort, we must seek to provide oppIortunities for individuals with disabilities. Only then can Americans with disabilities achieve full participation in the workforce and reach the height of their ambition.

My Administration is committed to promoting positive change for every American, including those with disabilities. The Federal Government and its contractors can lead the way by implementing effective employment policies and practices that increase opportunities and help workers achieve their full potential. Across this country, millions of people with disabilities are working or want to work. We must ensure they have access to the support and services they need to succeed.

Right on. Well, how do we get to that culture of fostering and encouraging employment opportunities? What’s blocking people with disabilities right now from having jobs?

How about all the disabled people I know who are working incredibly hard. Doing fantastic, great work.

Who’s paying them? Often, no one. I’m a wheelchair user and have a full time job. Universally, people are surprised to hear that, even people I know as colleagues in social media.

As I wrote and deleted drafts of this post — mostly angry, despairing, bitter , soul-searching rants — I asked myself, "Who do I know who’s disabled, and has a job?"

Not a lot. I know few people, mostly online. My friend Haddayr, a advertising copywriter and science fiction author. Denise, for example, from Dreamwidth. Rivka from Respectful of Otters. Katja Stokley from Broken Clay. Mel Chua. They’re bloggers and writers who represent as well as doing their day jobs. And people I don’t know, but hope to meet someday, like Laura Hershey and Kathleen Martinez and Simi Linton.

But who do I know who’s doing fantastic work? I can name so many.

We can’t work, often, because working risks our benefits that are essential to survival. Working denies us health care. We can’t own more than $2000 of assets, or we don’t get Medicare or Social Security benefits. We are trapped in a cycle of poverty. Programs that promise to help or employ end up tickets to exploitation. So we end up working for free.

I look at this grant to Cornell University and you know what? Great. But I’m not holding my breath. They just got 1.6 million dollars. How much of that is going to actually go into the pockets of people with disabilities? NOTHING ABOUT US, WITHOUT US. I hope they hire some people with disabilities, with that grant, and that, when they interview disabled people about their actual experiences working, that they pay them for their time.

You want to know what would help people with disabilities get jobs? How about asking them what they think would help?

My message back to President Obama is to look for some of the people doing amazing work. Then, ask why they’re not being paid. And pay them. Change the policies of health care and benefits so they can be paid without risking their lives or their already precarious ability to live independently.

Hire them. Don’t exploit their labor.

If you can’t hire them without screwing up their benefits and health care? Get in there and navigate the maze of policy and bureaucracy that blocks them. How about this radical idea. Hire people part time, and give them insurance. Enable all people at your company to live a life in balance that doesn’t drive their health into the ground.

Better yet, you as a company, as an employer, can say, "We want everyone in this country to have the health care they need to survive day to day, without it being tied to their employment."

Here are some of the people who are not just working, but who are great writers and thus, advocates who benefits all of us with disabilities. They mean a lot to me and have made a huge difference in my life. The solidarity I’ve found in their keeps me going in my own daily work.

Wheelie Catholic, advocate, thinker on human rights and social justice, and a fantastic writer.

Glenda Watson Hyatt from Do It Myself blog.

Jen Cole and Alejandra Ospina who run GimpGirl, an organization with a 15-year history, for women with disabilities.

Wheelchair Dancer writes about performance and physically integrated dance.

UberGeekChick, who does a podcast about computer programming and self-expression, is an open source contributor, and who takes Twittering to great heights.

CripChick, a fierce outspoken activist and talented writer!

Eva from The Deal with Disability who shares her point of view of how people see her in daily life and the assumptions they make.

FridaWrites who argues beautifully for universal design, access, and human rights.

Book Girl from Falling off my Pedestal.

Nick Dupree who is an advocate for Community Choice.

Barriers, Bridges, and Books talks about some of the complexities behind work, life, and disability. Now for example, if you have a disability , you may need some extra health care. But to get Medicare, you cannot own more then $2000 in assets. This is part of what traps people with disabilities into a cycle of poverty.

In Falling, Terri describes her fears for her teenage daughter’s future.

Gayle DeVilbiss ‘s video of her story of misdiagnosis, chemo, and then being denied Social Security benefits, on Disability Information and Resources blog.

Wheelie Catholic reports on the Sears discrimination case.

Katharine Ganly on Global Voices Online talks about people with disabilities trying to survive, get an education, and work in the Democratic Republic of Congo.

Read on into a great analysis, in Disability and Employment in Argentina: The Right to Be Exploited?

Being disabled, physically, may mean being deaf, having mobility impairments, being blind, being exhausted or in pain, having a chronic illness or mental illness, and so on. Those are differences or impairments. Personally I use the word disability as a cultural and political affiliation. But being "disabled" doesn’t mean we can’t work. It means we might need to work differently. And it means we have a harder time defending our own rights and asking for accommodations.

What can you do as employer?

- Don’t make assumptions. Ask what you can do, and mean it. Don’t then subject your disabled employee to a backlash.

- Provide deep information. A map of your office complex with elevation changes, level or ramped paths and handrails marked, elevators, bathrooms, and parking. That will be useful, and appreciated, by more people than you would predict. We might have to plan. We might have limited energy. Deep access information gives people what they need to make informed decisions.

- Work out technological solutions. Telecommuting!

- Try to educate yourself. Read some blogs, some books, and so on. I’m a little skeptical of diversity training. I recommend the WisCon feminist science fiction convention‘s guide to disability access at events. It applies to many physical environments and events.

- Be flexible. You know what helps me most – beside telecommuting half the week – in my work at BlogHer? This:

A couch! Thank you, BlogHer, for the glorious, amazing, couch in my cube. And for not minding too much when I’m lying on the couch on my back, computer on my stomach, my back and my leg experiencing awesome pain relief.

- Be inclusive socially. Plan your office social time with everyone in mind. (I swear, many places, they might as well have had special events underwater. Oh, there’s no ramp and you just realized and "wouldn’t mind carrying me up the stairs"? Thanks for the pain and loss of human dignity. Now let’s party. Or get to work. Or now that I’m completely pissed off and discombobulated, how about I give an hour long public speech.)

- Don’t be a jerk. I mean this nicely. Joking about a person’s disability is rarely cool. Pressure is on that person to get along, to be a supercrip, to show they can "do it all" and can tolerate whatever gets thrown at them.

- Actually help people with their paperwork situations. Defend your employees. Help them fight their fights just as you might help your employee from outside your country with a visa situation.

Thanks for listening.

What do you think about my suggestions for employers? Do you have thoughts as a person with a disability or impairment? What work do you do? Do you get paid? Are you self-employed?

Or, as a friend, family member, ally, co-worker, or employer of a PWD, what in your opinion could be helpful to remove obstacles, and to decrease the huge unemployment rate for people with disabilities? We have a lot of moms of kids with special needs here on BlogHer and in the network. I would challenge all of you in particular to radicalize politically beyond support groups or cures, to connect with adults with disabilities who are advocating for social change, to look ahead to the future.

Originally published at BlogHer.

Money money money…these days, it’s all about the money. Who’s got it, where can you get it, how can you get it, and how to spend it? Well if you’re a small business and are looking for just a small amount of money, a microloan might be just what you’re looking for. Designed to provide more loans to small businesses, microloans have made small amounts of capital more readily available. Since conception, the microloan program has awarded over $112 million in more than 12,500 loans.

Read more…

It is the usual reminder, just a little firmer than in the past. This week, as it has done every couple of years, New York City Transit is starting an advertising campaign asking New Yorkers to remember to “please offer a seat” to disabled passengers on buses and subways.

There was a time — who knows if it really existed — when such civility was assumed. However, the new posters on subways and buses give riders an extra prod: “It’s not only polite, it’s the law.”

“It’s the first time we’ve really stressed this,” said Paul J. Fleuranges, vice president for corporate communications at New York City Transit, the largest arm of the Metropolitan Transportation Authority. Those who decline to give up a seat on request face up to a $50 fine, he said. (The new campaign also warns that “not all disabilities are visible.”)

As long as there has been public transportation, there has been grumbling about healthy young men taking a load off while the pregnant, the old and the infirm stand by.

Recently, some bloggers have chronicled their own troubles securing a seat while injured or pregnant.

Read the rest…

Coming up in a month (June 22, 2009) is the 10th anniversary of the Olmstead decision, declaring that people with disabilities have a right to live in the community and not in nursing homes and other institutions. It is a great opportunity for people with disabilities to come together to make sure that the dream of Olmstead becomes a reality! Given the talk of health care reform in Washington DC, and concern about whether or not President Obama and the federal government will make sure that community-based choices are included, publicizing the Olmstead anniversary is more important than ever.

Just like the disability community held events around the country for Obama’s inauguration or for the introduction of the Community Choices Act, we’d like to coordinate events nationwide for the Olmstead anniversary. There are a bunch of events you could do, and we want to help you make it happen!
*** Take Action ***

1) Whether you are a group or an individual, pick one of the following events you think you can do.
2) Email disabilitymovement@gmail.com to tell us what you’d like to do and what kind of materials or other help you need.
3) Pick 1-2 new forms of outreach in the list below, so that you can bring in new people.
4) Hold your event and have fun with it!

Possible events:

• Call or visit your district’s members of Congress, or the local Health & Human Services office; ask what they’re going to do to implement Olmstead
• Hold a press conference in front of a nursing home or other institution
• Get a group of people to go visit a nursing home — tell the nursing home that you’d like to bring cookies and visit with people
• Create a film of people talking about wanting to stay out of nursing homes and other institutions; or if we can find one that exists, show a film!
• Pass out flyers at a grocery store, shopping mall, or other busy site, talking to people about Olmstead and institutions, maybe including some kind of survey about thoughts on living in a nursing home
• * Have a rally at HHS office, state building, or possibly a nursing home (this last can be tricky)
• Have a caravan to different sites above
• Deliver a signed copy of the AAPD petition to local Congressional offices, maybe deliver them with some kind of “Implement Olmstead” cookies.
• Have an event and invite legislators to come and talk about independence for people with disabilities
• Get people together to talk about Olmstead (educate ourselves). Provide snacks, have everyone write a letter and sign the AAPD petition. You could also get people together and then go out before or after for any of these other suggestions.

Ideas for outreach:

• Talk to leadership at churches in your area, and get someone to make an announcement, pass out flyers, etc.
• Go to a health clinic or hospital, and ask people to sign a petition (so you can get contact information) and pass out flyers
• Knock on doors at housing developments for people with disabilities
• Post on facebook and blogs
• Go to Vocational Rehab offices, ask them to talk to clients, pass out flyers
• Go to your local CIL, Developmental Disability Council, etc.

THANK YOU!

Jessica Lehman & the Justice for All Action Network Organizing Workgroup

Twenty-five year-old businessman, Arran Smith, set up his IT company five years ago to provide computer services and support to local businesses and individuals. Diagnosed as severely dyslexic at eight years-old, Arran’s condition historically prevented him from reading and processing information.

Now managing director of a successful business, Arran spends considerable amounts of time on the road, so has invested in CapturaTalk v2, the UK’s first mobile phone software which converts text to speech, enabling him to access to emails, digital documents and proof read vital documents on the go. With Oxford English Dictionary definitions at his fingertips, Arran is able to access and make sense of difficult information from one handset quickly and discreetly.

Arran began his IT career at Bosworth Community College in Leicester, where he studied for an IT GNVQ, which he then furthered with an advanced GNVQ at North Warwickshire & Hinkley College. “When I was diagnosed as dyslexic, technology was no way near as advanced as it is now, so I struggled immensely with my reading, writing and spelling. Moving on to college, I was given much better support which enabled me to get to grips with computers and discover my passion for IT. I find typing a lot easier than writing by hand, so using a computer gave me a lot of confidence to try new things and further my career.”

Fresh out of college, Arran’s first job as Project Officer for a local charity involved designing and managing the charity’s web site and designing a mobile computer project. Arran comments: “As a very imaginative and creative person, web site design and branding was a dream job, however, my dyslexia meant that I relied heavily on my friends and family to proof read all my web copy which is incredibly frustrating. Assistive technologies such as text-to-speech and speech-to-text have really changed my life; I no longer feel like a burden to people as I can check my own work.”

Arran’s work with the charity then inspired him to set up his own business, Azco Services. As managing director, Arran spends considerable amounts of time travelling to and from jobs; so much of his communication with clients takes place on e-mail. Perfect for accessing information on the move, CapturaTalk enables text-to-speech for Pocket Word, Notes and tasks, SMS, e-mail and Pocket Internet Explorer applications. Arran said: “As I am out and about a lot, I need a quick and effective way to keep in touch with clients. As I still often rely heavily on pictures and colours to understand information, having a solution which will instantly read out my e-mails, texts and even Word documents is invaluable. The fact that it is on my mobile is ingenious as I always have my phone on me and never need to worry about lugging a laptop everywhere I go. As my phone’s got Windows Mobile, I also don’t have to worry about being without my calendar and simply sync my phone up to my laptop when back in the office.”

Read more… ]]> http://activegreymatter.org/2009/06/entrepreneur-uses-latest-mobile-assistive-technology-to-compete-in-the-business-world/feed/ 0 http://activegreymatter.org/2009/06/economy-makes-finding-a-job-harder/ http://activegreymatter.org/2009/06/economy-makes-finding-a-job-harder/#comments Wed, 03 Jun 2009 00:53:41 +0000 Krishanna http://activegreymatter.org/?p=460 Continue reading →]]> From Profoundly Yours

This is a question I am often asked: Does the shaky economy make it harder for people with disabilities to find a job? Undoubtedly, yes. The job marketplace is more competitive, and frankly, it’s easier for an employer to hire someone who doesn’t need an accommodation.

Though the American with Disabilities Act prohibits discrimination of the disabled, it still happens indirectly — and more so when the hiring pool is larger. Just look at U.S. employment rates from the past year. Only 46 percent of working-age people with disabilities held jobs, vs. 84 percent of non-disabled people. The national unemployment rate for people with disabilities was 12.9 percent in April 2009, compared to 8.6 percent for non-disabled Americans.

And here’s a little-known fact: It takes someone with a disability 10 times longer to land a job than the average person. “Employers want to hire people with disabilities but they’re often not trained on how to find, interview or manage this group,” says Sheridan Walker, founder of consulting firm HirePotential.

The good news is assistive technologies can level the playing field. Many of these accommodations are already in use in the workplace, and most cost less than $500 or are free to use. For instance, a screen reader for the blind is built into both Windows and Mac computers. Speech-recognition software, around $200, is used by both busy CEOs and workers who are dyslexic. Instant messaging programs, free and used in offices everywhere, are also very useful for the deaf and hard or
hearing.

Read the rest…

“I’m the sort of person who’s prone to saying that we could have a more entrepreneurial economy in the United States if we had a universal health care system. The thinking is that our current system unduly punishes risk-taking. There are a lot of different aspects of this, but basically the American health care system both produces labor market rigidities (”job lock”) and makes jobs at small firms relatively unattractive. But do I have any actual evidence of this? Well, not really. I think theory alone can establish that the effect should be there, but how big is it”?

Read the rest…