30 Days of Thanks Day 14: My Peers

I spent today at a meeting of the New York State Independent Living Council (NYSILC). This council is a non-governmental nonprofit comprised of 25 appointees from around the state. As a council, we are responsible for developing, monitoring, and evaluating the Statewide Plan for Independent Living. We also conduct surveys and develop reports about issues impacting New Yorkers with disabilities. You can learn more by watching this video:

After the meeting, my friend Blaise and I spoke about disability and independent living to a class of local community college students. We have done this once a semester for almost three years now. Tonight’s students were engaged and asked GREAT questions about disability policy, etiquette, personal assistance and language.

Today I am grateful for the relationships I have with my peers. I am fortunate to have this strong network of other disabled advocates. I learn from them every day, and grow through our interactions. When I have questions, they are quick to offer answers and insights. If I am struggling, they offer suggestions and advice.


The Importance of a Plan

April 16 was National Healthcare Decisions Day here in the United States, and I meant to share this post then. Even though it is a day late, the information is still valuable.

There are many times I am lazy. I don’t always sort my mail in a timely fashion. I often choose a good book over exercise. If the papers on my dining room table pile up for a week or two (or seven), I can live with that.

There are occasions when I keep my mouth closed. Granted, they are rare. But there have been instances when I did not share my true feelings with a potential romantic interest for fear of rejection. I have kept quiet in group settings so as not to delay progress towards an objective when I really had nothing additional to offer. This year, I have refrained from most political discussions.

However, when it comes to my healthcare and my wishes, I am never quiet. I wrote my first advanced directives when I was twenty-five. I have regular conversations with my doctors, friends and family about my health. They know my wishes, and thankfully have followed them each time I have needed them to speak or act on my behalf.

Last year, I wrote about my experiences relying on my healthcare agents in this post. In 2013 when I was unresponsive and ventilated in a coma for four days, my sisters and friends ensured doctors followed my wishes. They agreed to treatments based on the previous discussions we had.

This year, while I waited for surgery on my broken leg, I reviewed my wishes with my sister and friend who were with me at the hospital. There was an additional seriousness because we all remembered the last hospitalization. Again, my friends and family spoke up to doctors who only wanted to see a “wheelchair bound” individual instead of the active professional I am. When I was zonked out from the pain or medications, they gathered information and asked questions on my behalf.

Nobody wants to think about difficult times. Nobody wants to think about losing ability or becoming disabled by illness or injury. We avoid the conversations about end of life and disability because these things happen “later,” or to someone else, but of course not to us. We do not like to face our mortality or frailty. We are invincible, and we will be healthy until the day we suddenly die in our sleep.

Of course, life seldom works that way. We have car accidents or strokes. Our hearts, lungs and livers get diseased and fail to work. Or, someone who is supposed to help us get on and off the toilet drops us, and we break a leg. Wait, that may just be me…

The point is, there will come a time when you will need to make important medical decisions. Hopefully, you are alert and conscious when it happens. If you are not, who will speak for you?

Photo of an empty hospital hallway.
Make your plan before you end up here. Image from Pixabay.

I am alive today because I have had – still have – those difficult conversations. The people I trust to act on my behalf have followed my wishes. Yes, medical treatments and doctors have played a role in keeping me healthy. But when I was unable to advocate for myself, I had a support network of people who rallied around me to make sure medical professionals viewed me as a complete person.

The orthopedic surgeon who repaired my fracture in January continues to remark on my support team. Each time I see him the conversation is the same, something like:

Where are your sisters and friends? They’re ‘Johnny on the spot’ for you. You’re lucky to have them – they’re great ladies.

I don’t know if he really thought they were great when they were questioning him during my hospital stay. But he’s right – they ARE an amazing team. I am blessed to have them.

Who is on your team?

Do they know you are counting on them?

Have you given them the tools to do their job?

The National Healthcare Decision Day website has links to resources you can use to help start the conversation. Take the time now to put your wishes in writing and share them with your medical team and your loved ones.

Because, as the theme for NHDD 2016 says, It Always Seems Too Early, Until It’s Too Late.

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 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 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.