It’s Not the Worst Thing

This morning while conducting some research for a future post, I came across several blogs related to disability and wheelchair use. Specifically, they discussed adjustment to using a wheelchair for mobility. As I read them, I noticed some recurrent themes and felt compelled to write a post of my own.

Most of the blogs I read were written by people who were reluctant to accept their wheeled mobility. They spoke of the wheelchair using derogatory terms, and talked about being “confined” to their chair or “dependent” on a device for their mobility. I feel I must point out each writer was someone who had acquired their disability and had once known walking.

Here’s the thing though – I was once a walker too. I have not always relied on a wheelchair for mobility. I have had to adjust to life on wheels rather than on two feet.

My friends may tell you my adjustment was not always pretty, and they’re right. Sure, I knew at some level I would need to use a wheelchair for 100% of my daily mobility. Eventually. Some day. In the future.

I never expected it would happen at age 20. I had not truly prepared for the adjustment to start while I was still in college, getting ready to take on my final semester of undergraduate school. I wasn’t ready to explore all of the changes created in my everyday life.

But even though I wasn’t ready, I always knew this change was not the worst thing which could happen to me. Using a wheelchair is never the worst thing.

How do I explain that to someone recently paralyzed after a car accident or injury? How I do convey this to someone recently diagnosed with multiple sclerosis or another neuromuscular disease? Perhaps I don’t. Maybe people need to come to the realization over time in their own way. I think I had an advantage over some.

When I lost the ability to walk, I never lost my ability to function. My wheelchair was the tool which allowed me continued access and participation in my world. My wheelchairs (I have had many over the years) have never felt confining or limiting. They are my legs and feet.

The worst thing is not having to rely on a a wheelchair. Far worse is to be dependent on a wheelchair, and have it taken away.

I know people who are stuck in bed for weeks because they are unable to have necessary repairs performed on their wheelchair. The repairs may not have been approved yet by Medicaid or Medicare. Or perhaps there is not a technician available to get to the person to perform the repair. Or they are trapped in an abusive relationship and the person who is supposed to be their caregiver has decided to “punish” them by denying them their wheelchair. It happens. I know several women who have escaped such a situation.

The worst thing is not having to rely on a wheelchair. Far worse is to be dependent on a wheelchair, and not find access in society or your community.

I remember the days before the Americans with Disabilities Act. When I first moved to Albany, not every corner on every intersection had curb cuts. My friends and I knew where to cross the streets so we could avoid the curbs when we walked downtown. We frequented Michael’s, a dive bar a block away from college, because it was the only bar within walking distance which was wheelchair accessible.

I’m not saying access barriers have gone away. There are still places which are not accessible to wheelchair users. I know people who have been on waiting lists for accessible housing for years and who are unable to independently access their community while they wait. But I know we have made great progress in many areas over the past twenty five years. As one example, in 1987 when my family flew to Los Angeles, I needed to be carried aboard the airport shuttle because it was not accessible. Last month, I drove my wheelchair up the ramp of the shuttle bus.

My wheelchair is an extension of me. It is a part of my body. I know its quirks, its sounds, its likes and dislikes. I know how much pressure to place on the joystick to smoothly clear a threshold without spilling my coffee. I am an expert at swerving to avoid pedestrians who are too busy texting to look up and realize they are about to walk into me.

This shiny piece of red and black metal has given me opportunities and allowed me to live the life I want to live. My wheelchair has made it possible for me to explore parks and nature trails. It allows me to work and follow my passion. It empowers me.

Let’s face it, my wheelchair also grants me certain privileges. I always get close parking, even at the mall in December. I never get stuck doing dishes at my parents’ house after holiday dinners because my wheelchair doesn’t fit near the sink. Nobody ever asks me to help them move or carry heavy boxes.

Yes, adjusting to disability takes time. A wheelchair is not everyone’s preferred mode of mobility. But, needing to use one – well, it’s far from the worst thing that’s ever happened to me.

The Word

Yesterday I read this post about a word I hate. I love language, and I love how we use words to communicate ideas, beliefs, values and thoughts. But there are words I NEVER use, and this post talks about one of those words. As I wrote in my comment on the post, I cannot remember the taunts or words used to pick on me about my uneven gait (my waddle as we called it) or my reduced strength. But I can clearly recall exactly when and where two classmates called me this word in third grade. It was the only time I went home and cried to my mother about being made to feel less than adequate.

This word is toxic and hurtful to many. I speak to my Personal Assistants regularly about how this slur is not be used in my house.

What word raises your ire and makes your blood boil?

sunshine in puddles

My stomach is clenched trying to decide whether to rock the boat. I am not one for confrontation…I’m actually quite skilled at avoiding it. But I have to say something. I have to point out the faux pas even though I know it wasn’t intended. It was staring at me so hard that I couldn’t scroll past. This has happened a few times now. There are people who make a linguistic faux pas. The “oops, I’m sorry” (and genuinely so). No excuses made just owning a mistake. We all do booboos of some sort. I see this as an opportunity to communicate and educate. Which is much the same with those who really don’t realise their offence (fewer, and younger, but they are out there). A chance to inform is good…if not occasionally tiring.

The term mental retardation was diagnostic, or at least medically descriptive, many moons ago. So the…

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The words "30 days of thanks" in cursive writing on a green square.

30 Days of Thanks Day 1 – My Amazing Personal Assistants

Take a moment and think about your weekday morning routine. It probably starts with the alarm clock interrupting an amazing dream – you know, the one where Hugh Jackman comes to take you to a secluded island in the tropics. Oh, wait – that’s MY morning. Sorry.

After hitting the alarm, you may stretch in bed or maybe you sit and stretch before standing. Some people may make coffee the first order of business, others may go to the bathroom. You shower, perhaps shave, brush your teeth and get dressed.

Now imagine how your morning would be different if you needed assistance from someone else to perform all of those personal care tasks. My morning starts with the alarm clock but rather than getting up out of bed I wait. At 6:00 AM, my Personal Assistant (PA) comes into my house. I listen to her make my coffee – I’ve trained them all so they know not to come into my bedroom first thing in the morning without a cup of coffee in their hand. She turns off my wheelchair charger, moves the chair next to my bed, helps me sit up and hands me my glasses. She helps me transfer from the bed to my wheelchair, then onto the toilet. While I take care of business, she gets my clothes ready and makes the lunch I will take with me to work. When I’m done she helps me back to my wheelchair then into the shower. She washes my hair, hands me my face wash, and helps me scrub my back and feet. When I am done, she helps me dry off and transfers me back into my wheelchair. She puts lotion on my back and lower legs then assists me as I dress. After I’ve brushed my teeth, she helps me dry my hair and makes sure the back looks good before I spray it and leave for work. Most days this takes two and a half hours but I can do it in two if I have to. And that’s just the morning routine.

I have a staff of thirteen wonderful women who serve as my arms and legs – doing everything I am physically unable to do so I am able to live independently in the home of my choice. Without their assistance, I would have no choice but to rely on a medical model of home care, or live in a nursing home or other medical facility. And really, who wants to do that just because they need help going to the bathroom?! I’m not sick. I just can’t move my muscles the way I want. So, I rely on them. They wash my clothes, do my grocery shopping, help me cook my meals, clean my house, water the plants and kill spiders and creepy crawlies. And they do it all with smiles, laughter and happiness.

My primary team – Michelle, Therese, Tina, Candi, and Margaret – and my back ups – Caroline, Sally W, Crystal, Sally B, Stephanie, Sarah, Ronda, and Karen – are dedicated, kind, empathetic, and reliable. They come to work in blizzards, sometimes spending the night to ensure someone will be there in the morning to get me out of bed. They have come to my house at 2:30 AM when I am about to be sick or when I have diarrhea. When I was released from the hospital last year and required an additional twenty hours of assistance each week for six weeks they took on extra shifts to help with my recuperation.

Although they don’t complain to me, I know I am not always an easy person to work for. I am picky about the way I like things done. You probably are too. If you think you aren’t – let someone else put your underwear on you tomorrow morning. You’ll discover how picky you can be! But my PAs accept my direction and follow the routine I have established. They permit me the freedom to live the life I want to live with the knowledge my care needs will be met on a schedule that works for me.

I have been managing my care since 2008. Sarah, Therese and Stephanie have been on my payroll from the start. At this point, all but one member of my team has been employed by me for at least a year. Through my interactions with them and the PAs in my past I have learned how to be a more effective manager, how to offer constructive criticism without malice, how to interview potential job applicants and how to terminate a working relationship.

November is National Home Care Month. It is only fitting that I start this monthly challenge of thankfulness giving praise to the women who work at my house each day so I can live an empowered life. I am grateful to them, and the others who perform this work across our country.

National Disability Employment and Awareness Month

Here in the United States, October is many things. Breast Cancer Awareness Month. Domestic Violence Awareness Month. Down Syndrome Awareness Month. Spina Bifida Awareness Month. Pastors Appreciation Month (in case you are already aware of your pastor and want to do more).

October is also National Disability Employment and Awareness Month (NDEAM). This campaign is held annually to raise awareness of disability employment issues and to celebrate the contributions of workers who have disabilities. The theme for this year is “Expect. Employ. Empower.”

Earlier this year, I wrote a guest blog post for Disability.Blog – the blog of Disability.gov, which is managed by the U.S. Department of Labor’s Office of Disability Employment Policy. In honor of this month, and in case you missed it the first time around, you can find it here:

Great Expectations Guest Blog Post

The statistics related to employment for people with disabilities are sobering. There are many reasons for this, and I will save my thoughts on those reasons for another time. If you are in a position to help someone with a disability fulfill their dream of employment, you have the opportunity to offer empowerment. We all feel better when we feel valued.