Redefining Disability Challenge – Question 42

This week, I resume my weekly posting in this blogging challenge. The challenge, created by blogger Rose B. Fischer, consists of fifty-two questions. To read my prior posts in this challenge, visit the Redefining Disability Challenge page on my blog. This is my response to the forty-second question in the Challenge. As usual, I am not looking ahead to future questions, so I may inadvertently address some topics which will come up later in the Challenge. Here is this week’s question:

Why do you think media representation for people with disabilities is important?

I think accurate media representation of people of all abilities is important. Disability does not exist in a binary of “nondisabled” and “disabled” extremes. I view it as a continuum. People can find themselves at different points of the continuum throughout their lives. If you live long enough, you will travel on the continuum. Shouldn’t we see this continuum reflected in the media as a fact of life? To me, it makes sense this should be the case.

Movies, television shows, podcasts, blogs, and novels all have the power to tell compelling stories. Humans are drawn to stories and relate to well-told narratives. One way to lessen stigmas surrounding disability is to use media to tell accurate and honest disability stories.

When you go to the movies, do you see yourself on the screen? I rarely see a character like me. When you watch television, do you see characters who live a life like yours? I don’t watch much television, but when I do I don’t see characters living like me. When you search for a book, is it easy to find novels or stories which feature characters you relate to? I can’t think of a fictional character living a life like mine. I may relate to them, but not because of disability.

How would you feel if the only time you saw a character who looked like you was when the character was a villain? What if the character was only there to be the butt of everyone’s jokes or an object of pity?

Think about the last time you saw a character with a disability in a television show or movie. The chances are, the actor playing that role was not disabled. However, if you are an actor and you want to win an Academy Award, your chances might improve if you play a character with a disability in a movie. Dustin Hoffman, Eddie Redmayne, Daniel Day Lewis, Tom Hanks (twice), Jamie Foxx, and Geoffrey Rush are just some examples of men who won after their portrayal of someone sick or disabled.

I share my stories on my blog because they are a way to help others who have not been exposed to disability. But my stories are just my stories. I would never expect my disability experiences to be exactly the same as another wheelchair user, or someone who is blind, or autistic. Although we may share similarities in our narratives, each will have a unique story to share. It is important that we all be permitted to tell our stories in our own voices, rather than having someone else (usually nondisabled) tell it for us.

Unfortunately, media outlets don’t always let people with disabilities tell their own stories. And when they do include disability stories, they do not always use empowering language or portray disability in a positive light. The “wheelchair-bound” headline always makes me scream each time I see it in print. Don’t even get me started on “special needs.” My needs aren’t special. They are basic human needs. As the book says, everyone poops. (Click the link to watch an animated version of the story.)

As a child and teenager, I rarely saw depictions of disability in the media. The few local news stories to feature disability often included me as an example of someone who “didn’t let her disability define her.” Sometimes the stories included a cute photo of me sporting uneven bangs and a gap-toothed smile, with my leg braces in view. Occasionally I was featured in fundraising photo-ops, television commercials and telethons for the Muscular Dystrophy Association.**

Today, I view these types of stories as a type of inspiration porn. If you aren’t familiar with that word, I encourage you to watch the late Stella Young’s brilliant TED Talk. Oh, go watch her even if you’ve seen it before, because she is just that good and I still mourn the fact that I didn’t get to meet her on my trip to Australia last year.

Inspiration porn – images or stories objectifying disabled people by attempting to inspire and motivate those of you not fortunate enough to be disabled like me – is a form of media representation which needs to stop. I know you have seen those stories because they are regularly in my social media feeds and my local television news.

The photo of the runner wearing prosthetic limbs with the caption, “What’s your excuse?” The unspoken message is that if she can do it – a disabled person who must have it worse than you – your life can’t be all that bad. After all, someone else out there has it worse than you and is still managing so quitcherbitchin.

The senior class president makes a “special proposal” and invites the disabled girl to the prom. Of course, the local television channel is there to capture it all. At least my local station gave the girl in question a chance to talk in this clip. I’m sure the young man is very nice. And I am happy this story actually gave the young woman a chance to speak on camera. But I have to wonder how she felt as the object of the story. Did she think the only way she deserved to be asked to prom was to have the local news media make a hero out of the boy who asked her? How will she feel the next time someone asks her out? Will she suspect it is out of pity instead of someone having a genuine desire to spend time with her? I am not alleging this young woman was asked out of pity, but imagine how you would feel as the object of this story.

I went to the prom, two proms in fact. Both times, I asked my dates to go with me. They agreed with little fanfare. The local newspaper did not make them out as heroes for accompanying me to a dance, thank goodness. Both times, we were just friends who got dressed up for a night and had fun with our other friends. What is so inspirational about that?

The most insidious inspiration porn includes videos or photos of disabled people taken and posted without their consent. Maybe you remember the incident last year when a fast food employee in Kentucky assisted a disabled customer who was unable to independently eat her meal? Another customer captured the moment and shared the video which soon went viral. I wrote about my reaction to one such story in this post. A friend just shared a story which aired on ABC news of ‘a “hero” employee in a Georgia restaurant who helped a handless man eat.’ That’s their copy – I didn’t write that.

When these stories hit the mainstream media, the stories never include an interview with the disabled customer, and rarely disparage the lack of appropriate social supports which might have helped the subject eat in a dignified manner rather than rely on kindness from strangers to meet a basic human need. If society viewed disability rights as civil rights (radical idea, I know), the media would not have difficulty coming up with disability stories. Without much effort, I can think of several. My friend P. who is unable to legally marry his partner A. because he would no longer be eligible for the benefits which pay for his Personal Assistants. Or my friend C. who endured years of domestic partner abuse because she was unable to locate affordable accessible housing and escape her abuser. Or my friend N. who had to live for nine months with the man who was sexually abusing him because nobody believed his allegations. N. has a cognitive disability and people who should have been advocating for him thought he was making up stories.

What can you do to help the media tell better disability stories? Become better media consumers. Read blogs written by disabled people. Watch films made by and featuring actual disabled actors and actresses. Speak out against inspiration porn and for the love of all that is good – STOP SHARING INSPIRATION PORN ON SOCIAL MEDIA!!! Just because we can share or post something, does that mean we should?

If you would like ideas on blogs to read or sites to visit, here are some to start you in your discovery. This list is by no means inclusive, and you should feel free to add your favorites in the comments.

Disability Visibility Project

How Did We Get Into This Mess

Dominick Evans

Tune into Radio Carly

Disability Thinking

Of Battered Aspect

Bad Cripple

Smart Ass Cripple

Words I Wheel By

Two Thirds of the Planet

That Crazy Crippled Chick

Crip Novella

And, just in case you weren’t clear on my position – I guarantee I will NOT be kind to the stranger who takes a video of me in public without my consent and shares it thinking it might inspire others. I am counting on all of you to inform me if you ever see this. Thank you in advance.

 

**I do not have any negative feelings towards my parents for allowing me to be included in these stories. My parents always asked me if I wanted to be involved, and never made me participate in any media against my will. Their rationale for my involvement as a poster child/goodwill ambassador for the organization was simple. They viewed it as a means to give back to an organization that supported us with financial assistance for medical treatment, durable medical equipment and summer camp. I learned valuable life lessons from my early media opportunities.

 

Redefining Disability Challenge Takes a Sick Day

Each Wednesday, I post my response to a question from the Redefining Disability Challenge. But today I have nothing to share.

For the past five days, I have been home sick with a bad cold which morphed into a sinus and ear infection. I have spent the days being miserable, sitting wrapped in blankets, trying to sleep (which is REALLY difficult when you have congestion and rely on a BiPap).

I am a terrible patient when I am sick. But I took advice from other advocates and did what I had to do to feel better. I’m working on my self-care routines this year and never expected I’d have a reason to practice right away.

The next question in the challenge deals with disability and the media, and requires more attention and energy than I have had this past week. So, I will publish my response next Wednesday.

I am feeling better and might actually leave my house today!

 

Redefining Disability Challenge – Question 41

Each Wednesday, I post my response to a question from the Redefining Disability Challenge. This is my response to the forty-first question in the Challenge. As usual, I am not looking ahead to future questions, so I may inadvertently address some topics which will come up later in the Challenge. Here is this week’s question:

Free post day! Write about anything on your mind today. Any topic that the series doesn’t cover, anything going on in your life related to disability, something you’re excited for, something you’re frustrated about.

I hate winter weather. I despise being cold. It causes physical pain when my feet get cold, and they are almost always cold from November to May each year. I dislike having to drive in snow with other drivers, most of whom never seem to remember to be cautious. I can’t move my arms if I have to wear bulky sweaters and jackets. Every movement requires more energy and takes more time.

My friends and family know I hate winter. I do my best not to complain. However, it is a safe bet I will put on a bright face in public yet privately curse the cold in my head for months on end. I spend far too much time and energy being miserable about something I cannot control – a behavior I routinely advise others to avoid.

Why do I stay in upstate New York where I am miserable due to weather for six months of the year? Wouldn’t it just make sense to move to a warmer climate?

I stay in New York for many reasons. My elderly parents live in New York, and I like being able to get to them within a couple of hours if needed. Most of my other family members live in New York, and they are part of the support network I rely on to live independently. But the main reason I continue to live in New York is because my disability requires me to use personal assistance to be independent, and New York has one of the best consumer directed personal assistance (CDPA) programs in the United States.

As I have mentioned in prior posts (you can find three of them here, here and here), I rely on the Personal Assistants I employ through CDPA to perform daily tasks most nondisabled people don’t think about. Each day, these dedicated women get me in and out of bed, help me on and off the toilet, assist me with showering and dressing, style my hair, prepare my food and clean my house.

If you required this level of assistance to meet your basic needs, and could not afford to pay for them out of pocket (private health insurance does not pay for long-term home care), you would want to live in a state with good services. I have decided to tolerate single-digit Fahrenheit temperatures and below-zero wind chills because I do not have $50,000 to spend on my personal care each year and I want to have control over how and when I receive my care.

In the United States, most people who require long-term home care rely on Medicaid to pay for care. Some states do not offer self-directed services to Medicaid recipients. Some states have waiting lists for home care, forcing people to remain in institutions. Some states limit the number of hours or care a person can receive. Most states limit the amount of income a person can earn and still remain eligible for CDPA through Medicaid.

New York has a comparatively generous Medicaid Buy-In Program for Working People with Disabilities. As a single person, I can earn almost $60,000/year and still remain eligible for CDPA. There are very few states which permit that level of income while retaining services.

I am not saying New York is the best state in the nation. There are many reasons to want to leave. But when it comes to how I live my life, there are many reasons I stay.

Even if it means another day of freezing cold. Spring is only three months away. I can make it.

Unless I win the Powerball tonight. Then all bets are off because the meteorologist just said it is 6° Fahrenheit this morning and I’m cold.

 

 

Redefining Disability Challenge – Question 40

Each Wednesday, I post my response to a question from the Redefining Disability Challenge. This is my response to the fortieth question in the Challenge. As usual, I am not looking ahead to future questions, so I may inadvertently address some topics which will come up later in the Challenge. Here is this week’s question:

Are you involved in any political or social activities related to having a disability? This could be anything from an advocacy group to an informal social gathering to participation in adaptive sports.

I have always been an active advocate for disability rights. I have spoken publicly about disability issues since I was a child, and continue to remain engaged as an adult.

Sadly, one of the ways I remain engaged is overlooked by the majority of Americans with disabilities – the power to vote. In my mind, voting is one of the most important ways we can become involved in the political process. As soon as I was old enough to vote, I registered with the Board of Elections. I vote each year, not just for large national elections.

Because of my current job with a disability organization, I have frequent contact with local elected representatives. I attend rallies and legislative action days with the Consumer Directed Personal Asssistance Association of NYS (CDPAANYS), the statewide membership association for agencies that assist people who use consumer directed personal assistance for their homecare. Through my involvement with CDPAANYS, I have met other advocates from across the state and developed a stronger peer support network.

I encourage other people with disabilities to become involved in advocacy using whatever methods feel comfortable to them. Some people like to write letters or make phone calls. Others like to go visit their elected officials for meetings. A few activists are willing to be arrested to make a political statement.

When you become involved in advocacy, you make it easier for your elected officials to know how issues impact real people – their constituents and people who vote. I know the man who represents my district in the New York State Assembly. I have been to his office at least once a year since he was elected and see him frequently at events. I send him emails when I notice he has supported legislation important to people with disabilities. He has also reached out to me by email to notify me when pieces of legislation have passed. This relationship would not be possible if I were not regularly engaged in advocacy activities.

In addition to my advocacy efforts through my employer, I am involved in activities at a local independent living center, the Independent Living Center of the Hudson Valley (ILCHV). I have participted in two writing classes hosted by the ILCHV. Not only was I able to practice memoir writing and photojournalism, but I made new friends and developed a deeper understanding of discrimination experienced by those who live with invisible disabilities. I am a stronger advocate due to these relationships.

Nothing makes an impact like a personal story. Hearing an individual’s experience allows us to personalize an issue which may seem abstract. Sure, it sounds great to say all sidewalks should have curb cuts. But when a person tells you they can’t get off their block because the sidewalk does not have a curb cut, the issue changes dimension.

I speak out whenever I can because I am in a position to do so. When I do, I always remember I am exercising my rights because others paved the way for me to do so. I advocate for others who are unable to because keeping quiet would be a wasted opportunity.

Redefining Disability Challenge – Question 39

Each Wednesday, I post my response to a question from the Redefining Disability Challenge. This is my response to the thirty-ninth question in the Challenge. As usual, I am not looking ahead to future questions, so I may inadvertently address some topics which will come up later in the Challenge. Here is this week’s question:

What technological advancements are you hoping to see in the future?

I know technology has made a meaningful difference in so many lives, particularly the lives of those living with disability. Text messaging has increased communication for the Deaf and hearing impaired. Dictation software has made it possible for people with limited dexterity to type and write. My elevating wheelchair seat makes it possible for me to transfer to the toilet. Trust me – that is HUGE when it comes to my quality of life.

While technology has improved my ability to engage in the world around me, I am not waiting anxiously for future technological advancements.

I often see videos with prototypes of new wheelchairs or exoskeletons – devices which will, in theory, make a physical impairment less disabling. When I see them, part of my brain twitches and says, “What is wrong with me functioning as I am? What if I don’t want to interact with the world the same way everyone else does?”

There were times in my younger days when I wanted new technology. In the late 1990’s, I eagerly investigated push-assist wheels as a way to avoid transitioning to a power wheelchair. Once I started using a power chair in 2002, I couldn’t wait to have an elevating wheelchair seat. My first roller-bar mouse in 2007 was an answer to many complaints about the physical pain caused by needing to move my hand off the keyboard to manipulate a mouse, and made it possible for me to continue to type for long periods of time.

But now, I just want the world to welcome me as I am. I don’t want a wheelchair that is able to climb up steps like a tank. I want an entrance which everyone can use with ease – whether they walk or use a mobility device. I don’t want gene therapy to replace my “damaged” genetic material. I want to continue to have access to consumer directed home care in the community, rather than an institution. I don’t want to be viewed as an inspiration for simply getting out of bed and showing up. I want people to expect more from someone with my talents and abilities who just happens to use a wheelchair for mobility.

Redefining Disability Challenge – Question 38

Each Wednesday, I post my response to a question from the Redefining Disability Challenge. This is my response to the thirty-eighth question in the Challenge. As usual, I am not looking ahead to future questions, so I may inadvertently address some topics which will come up later in the Challenge. Here is this week’s question:

How would you like to see the medical community change in the future?

Because I have lived with disability all my life, I have been engaged in the medical community as a patient or recipient of care for as long as I can remember. One of my earliest memories is from the time I spent in the hospital when I was three years old. I have also been a professional in the medical community as a speech-language pathologist (SLP). I have helped train medical professionals in my role as SLP and as a patient advocate and community volunteer. I have served as a presenter at local colleges, speaking to physical and occupational therapy students about my personal experiences. I was part of the cultural competency training team at a prior job, conducting trainings to public health professionals and medical providers throughout my state (New York).

I understand the culture of western medicine. I can easily navigate hospitals, doctor visits, rehabilitation facilities, and other medical situations because I have experience in many settings. I have worked with, and been a patient of, several talented, kind and knowledgeable professionals. I am grateful for their expertise and dedication to my well-being.

But, in general, there is a negative perception of disability in western medicine and in our society. It is due to our cultural recognition of disability as a Bad Thing – “capital B, capital T” as the brilliant, late Stella Young described it. Rather than being perceived as something which just happens in the natural course of life, disability is often seen as a fate worse than death. And many people, medical professionals included, equate disability with poor quality of life.

I have heard each of these sentences repeatedly over time:

I’d rather die than have to live like you – dependent on other people for everything.

If I had to use a wheelchair all the time, I’d kill myself.

I’d abort my fetus if I learned it had a disability.

If I have to live like that, just pull the plug and let me go.

The people who say these things may not equate disability with diminished quality of life. Most likely, they fear a loss of independence and the need to depend on another for basic survival. Yet, I suspect many of them would not describe my quality of life as “poor” even though I use a wheelchair and rely on Personal Assistants to meet my needs.

I am used to having conversations about disability and quality of life. I have written before about how my life does not accurately reflect the reality of life for the majority of people with disabilities here in the United States – here, here and here in case you missed those posts. If you like pictures and graphic representation of data, you can look at this infographic about disability produced by the United States Centers for Disease Control and Prevention.

I volunteer to speak to students, particularly medical students, because I want them to stop looking at me (and other future patients who happen to have disabilities) with pity. I want them to stop calling me “the wheelchair” when they describe me in the waiting room, and start using my name. I want them to hear the language which has been used to describe me (“wheelchair bound,” “deformed,” “suffering”) and recognize how difficult it is for a young person to develop a healthy self-image when all she hears from medical professionals is what is “wrong” with her instead of good things. If I ever end up in a hospital again, in a coma and unable to communicate, I want medical staff to listen to my family and friends when they advocate for my care as I have instructed them. I want the doctors responsible for my care not to be surprised when my sister tells them I have a masters degree and a license in speech-language pathology, work full time, manage my home care staff and 49 hours of care per week, travel, write and volunteer for community organizations.

People with disabilities need to tell their own stories in their own words and voices so the public hears and reads authentic disability stories, not the disability stories told by the non-disabled. This is particularly crucial because too many disability stories told by the non-disabled are based on the perception of disability as a deficit. My neurologist may be able to explain the biology of my neurological disease to his medical students, but he cannot tell them the story of my life as I can. He can describe the functional limitations caused by deteriorating muscles, but he cannot describe my experiences living day-to-day with changing abilities.

More than anything, I want to be treated as a complete person, worthy of quality care and respect from my providers. I want to tell my own story. Just like everyone else.

Redefining Disability Challenge – Question 37

Each Wednesday, I post my response to a question from the Redefining Disability Challenge. This is my response to the thirty-seventh question in the Challenge. As usual, I am not looking ahead to future questions, so I may inadvertently address some topics which will come up later in the Challenge. Here is this week’s question:

Have recent advancements in medicine or technology had any effect on the way you manage your disability?

This may be a question of semantics, but I have never considered “managing” my disability as something I do in my daily routine. Some medical providers talk about “managing” your diabetes or blood sugar, or “managing” hypertension. Changing technology has made it easier for me to function in a world designed for the nondisabled, but I have never defined that as “managing” my disability.

Because I am a word geek, I did what I often do when I am writing. I opened my dictionary and read definitions of “manage.” According to my trusty Merriam-Webster, manage is a transitive verb meaning “to handle or direct with a degree of skill; to treat with care; to exercise executive, administrative and supervisory direction of; to succeed in accomplishing; to direct the professional career of.”

There are other uses as well. As an intransitive verb, manage means “to direct or carry on business affairs; to achieve one’s purpose.”

I have always said I cannot “manage” a progressive neuromuscular disease. I cannot handle or direct with any degree of skill the manner in which my muscles deteriorate.

But, I do strive to treat myself with care. Certainly, I know I exercise executive, administrative and supervisory direction of my life. I have shown success in accomplishing and directing a professional career for two decades. I most assuredly direct or carry on business affairs. I manage my Personal Assistants (PAs) on a daily basis to achieve my purpose of living what I consider to be a good quality of life in a body which does not always function as I wish it did.

Yes, my progressive neuromuscular disease is going to progress as it will. I have no control over it and cannot manage that part of life.

However, I do my best to live a healthy lifestyle, get adequate sleep, eat nutritious food – all things which in theory should help me function at my best. I use technology to my advantage to be as physically active as possible in my community – an elevating wheelchair, an electric hospital bed, a modified van and more.

There is not an approved drug treatment which will slow the progression of my disability. Physical therapy and stretching may help slow the progression of joint contractures and muscle atrophy, but insurance will not pay for continued “maintenance” treatment which is not “restorative.” There is technology which improves my independence. I communicate with my PAs using text messaging, eliminating the need to wait for a return phone call when I am looking for a back-up to help me get in or out of bed. The emergency response alert system allows me to call for assistance with the touch of a button. Yes, I have one of those “I’ve fallen and I can’t get up” bracelets. I don’t wear it, but it is next to my bed should I need to summon help when I am alone at night.

I wrote about “managing” life as a person with a disability last year for the AbleBodies blog. In that post I wrote how I view managing as merely making choices in life.

All of us, no matter our physical ability, are given the opportunity to make choices. However, as a person who requires assistance from others in order to live independently, there is a critical difference in my choices. The distinction, for me and others who rely on caregivers or assistants for help with care, is we always make choices or consciously think about things most people never consider. The able-bodied have the luxury of a life without these choices, a gift taken for granted; and, unless pressed, would never consider these common happenings real choices or decisions.

We all make choices to help us “manage.” Everyone adapts to the abilities they have and makes life decisions for a variety of reasons. I choose to focus on making choices which maximize my ability to engage in the activities which are most important to me. Whether or not anyone else agrees with these choices, they are my choices. It is how I manage.

Redefining Disability Challenge – Question 36

Each Wednesday, I post my response to a question from the Redefining Disability Challenge. This is my response to the thirty-sixth question in the Challenge. As usual, I am not looking ahead to future questions, so I may inadvertently address some topics which will come up later in the Challenge. Here is this week’s question:

How has medical treatment and technology changed in your life time?

There has been such rapid advancement in medicine and technology in my forty-two years (sidebar – that’s the first time I’ve written ‘forty-two’ since my birthday last week!). Let’s just look at wheelchairs.

My first wheelchair was one of the old E&J ‘hospital-style’ wheelchairs – all chrome and heavy. When I got my first Quickie lightweight in high school, it was revolutionary (and black, not hospital chrome). A manual chair that weighed less than twenty-five pounds! Nowadays, that would be considered a heavy chair given the new models which are less than fifteen pounds.

There have been advancements in the technology available on power wheelchairs as well. My first power wheelchair (red – of course) did not have an elevating seat. I have had seat elevation for almost ten years now and that technology has preserved my ability to function at my maximum independence. It has also made it possible for me to access cupboards and shelves in my house and stores. It puts me at eye level when I am at social functions, and gives me the ability to “stand” as a public speaker and make eye contact with my audience members.

This week I am reminded once again how important it is to have MY custom chair. On Friday, while staffing a table at a health expo in a local shopping mall, my wheelchair died. You might remember this summer when the controller died and I was without my chair for a week. Guess what died again?

Did you guess controller? Bob, the best wheelchair repairman I’ve ever had, diagnosed it as either the controller or the left drive motor. Either way, my chair wasn’t working.

Of course this happened while I was out in public, on a day I was to be a featured artist at a local poetry reading, the day before I had plans to go to New York City with my best friend. These things ALWAYS happen at the least convenient times.

Bob (have I mentioned how wonderful he is?) was in the office and went above and beyond the call of duty on Friday. He drove to my apartment, collected my old clunker wheelchair, took it to the shop, installed new batteries and cleaned it all up so it was not covered in mold and dirt. Oh, did I tell you about my upstairs neighbor’s fish tank which sprung a leak last week, directly over my living room where I store this clunker chair? So, the chair was NOT clean since my ceiling had a dripping hole in it above where the chair sat.

But I digress. This post is about how technology has changed in my life. Not about how much I currently despise the smell of mildew, spackle and paint.

I am grateful to have my old wheelchair in working order while my newer chair is out for repairs. It will be a week until the parts come, so I am glad to be sitting in a chair which at least fits me -even if the armrest and back cane are bent and the joystick is loose. And this chair has a seat elevator, which means I am much more mobile than I would be in a loaner chair.

A seat elevator is not a luxury in my life. To me, a seat elevator means I can independently get mugs out of the cupboard and get afternoon tea without assistance. Have you ever been thirsty and not been able to get a drink because you couldn’t reach a cup?

A seat elevator means I can raise myself up into position to use my sink and brush my teeth without needing a spit cup. Have you ever used a spit cup? Do you know how gross they are?

A seat elevator means I can get onto the toilet in an emergency if one of my Personal Assistants is late and I can no longer ‘hold it.’ Granted, I would have to take a pair of scissors to my pants and underwear, but I’ve done it before. How long has it been since you cut off your pants so you could get on the toilet and avoid wetting yourself in the chair you must rely on for mobility each and every day? Four years, in case you want to know my number.

My seat elevator is an example of complex rehabilitation technology, or CRT. In the United States, funding for CRT is in jeopardy because Medicare is attempting to change regulations related to how we obtain CRT. Unless Congress takes action, these rules will take effect on January 1, 2016. Most insurers take their cues from Medicare regulations, which is why these rules need to be fixed.

I am not an expert on this issue, but thankfully there are several advocacy groups which are leading the charge to protect our access to the technology which maximizes independence and function in my life, and the lives of others who rely on CRT. Groups such as United Spinal Association and their Advocacy Alliance, the National Registry of Rehabilitation Technology Suppliers, the National Coalition for Assistive and Rehab Technology, and more have been pushing Congress to pass legislation which would prevent competitive bidding pricing to CRT.

You can learn more about this issue using any of the links I provide above. If you or someone you care about is impacted by CRT and relies on CRT to function, I urge you to become involved as an advocate. Elected officials need to know this is an important issue and the only way they will know is if you contact them. If your legislators have already signed on to support the bills, send them a message thanking them.

And if you think this issue doesn’t apply to you – remember, you are just one stroke, one car crash, one injury away from being a part of my minority group. You’ll want access to this technology when the need arises. Because if you live long enough, you will need the technology.

 

 

 

Redefining Disability Challenge – Question 35

Each Wednesday, I post my response to a question from the Redefining Disability Challenge. This is my response to the thirty-fifth question in the Challenge. As usual, I am not looking ahead to future questions, so I may inadvertently address some topics which will come up later in the Challenge. Here is this week’s question:

How has your perception of disability changed in your lifetime?

Disability has always just been a part of my life. I have always viewed my personal disability as just one trait which makes up part of my identity. This does not mean I have always embraced my identity as disabled.

When I was a child, I heard medical professionals encourage me to continue to walk for as long as possible. Walking was a good thing, and needing to rely on a wheelchair for daily mobility was a bad thing which should be avoided if at all possible. I should try to be “normal” as much as possible. They may not have used those exact words, but that was the message I heard.

I wish I hadn’t listened to them. I wasted so much time and energy on walking, and then wasted more time and energy using a manual wheelchair rather than a power wheelchair. I spent needless energy trying to do it all, rather than accepting the assistance I now use every day. I was stubborn and only made myself tired and worn down, which didn’t prove anything other than I am bad at asking for and accepting help.

Switching to a power wheelchair was one of the most empowering moves I made. In 2006, I wrote about it in an article entitled Empowered Chair for the National Registry of Rehabilitation Technology Suppliers quarterly newsletter. In the article, I described how liberating it was to have a chair which “kept up” with all I wanted to do.

My relationship with assistive technology (any device which makes it possible for me to live independently) like my wheelchair or my reacher has evolved over time. I now look at these devices as essential to my ability to function.

Wheelchairs aren’t to be avoided. They are tools which encourage engagement and interaction. Without my chair, I am stuck in my house. Give me a chair and I can access the world.

My identity as disabled is changing as I mature and learn from my peers. My professional experiences and my personal interactions have helped me develop a more global view of disability. Now more than ever, I realize how different my reality is from other people with disabilities. I have mentioned my status as an outlier in prior posts. You can look at US disability statistics at this site to see for yourself.

Today I view disability as a continuum rather than a dichotomy of just disabled and nondisabled. People can find themselves anywhere on the continuum at any point in life. When we view disability as a natural part of life which will touch everyone, rather than something which just affects someone else, we will start to see the cultural shift towards true acceptance and equality.

Redefining Disability Challenge – Question 34

Each Wednesday, I post my response to a question from the Redefining Disability Challenge. This is my response to the thirty-fourth question in the Challenge. As usual, I am not looking ahead to future questions, so I may inadvertently address some topics which will come up later in the Challenge. Here is this week’s question:

How has public perception of disability changed in your lifetime?

This is a question I struggled to answer. It should be an easy answer. I ought to be able to say public perception of disability has changed in a positive manner in the course of forty-two years. Most of the time, in my world, I can say that. The physical environment we live in has become more accessible. More people with disabilities are pursuing higher education. When I travel, rarely am I the only person using a wheelchair in public spaces. Every television set I’ve owned for the past fifteen years has closed captioning options. More books and magazines are available in alternative formats.

But while there has been some very positive movement towards community integration, I can’t say there is a positive perception of disability in our society.

I can’t say it because I continue to hear strangers tell me and others, “I’d rather die than have to rely on someone else to help me with personal care.”

I can’t say it because I regularly receive invitations to events but when I call to ask about accessibility, most times the event planners have not considered anyone other than a nondisabled, hearing and sighted person might attend their event.

I can’t say it because each week I read a blog post written by someone with a disability explaining (once again) why it is rude to assume people with disabilities need help and to just provide said “help” without asking first.

I can’t say it because only 35% of Americans with any type of disability are employed either full time or part time, as opposed to 76% of Americans without a disability.

I can’t say it because I am still told, “It’s nice to see someone like you out.” As opposed to where – in an institution where people who use wheelchairs should obviously be???

Does this mean everyone has a negative perception of disability? Of course not. In fact, with one out of five people self-reporting disability, chances are good you know someone (other than me) who has a disability of some sort. You probably are related to, and may even like, some of these people!

But when was the last time you saw a media story about a person with a disability which did NOT feature their disability? In my personal life, I can count on one hand the number of media interviews I have completed in my lifetime which have not involved my disability. And a quick Google search will tell you I have never shied away from media.

Part of the reason for me completing this blogging challenge was to provide my own disability story as I want to tell it as an alternative to the disability story often portrayed in mainstream media. There are many people with disabilities who are using blogs, YouTube and other social media to tell their own stories. I shared some of the ones I regularly read in this post.

I hope as more people with disabilities share their stories, the public perception of disability will start to change. Social supports and disability policy will hopefully reflect changing realities for people with disabilities and allow them real equality rather than regard them as second class citizens without autonomy. When that happens, perhaps disability will be viewed as part of the continuum of life, and not something which must be avoided at all costs.