What Happened to the Redefining Disability Challenge?

If you are a regular reader here at DeeScribes (and thank you if you are!) you know for several months I was posting my responses to the Redefining Disability Blog Challenge on Wednesdays. If you are new and want to see some of these posts, I have them listed in order on a special page you can find here.

I stopped writing these challenge posts when I broke my femur in January. I decided to take a break because I needed to focus on my rehabilitation. And frankly, the next question in the post requires more research and time than I was willing to or able to invest while recuperating.

I do plan to continue with the challenge because I think answering the questions is useful for me as an advocate and writer. The challenges have forced me to consider how I view my identity as disabled, what that means, and why it has taken me almost 42 years to embrace the label with pride. The response from readers has been encouraging and eye-opening. Disability is a part of who I am. I rarely consider how my reality is different from the norm, because it is just what I have to do to get through this amazing thing called life. I never set out to write a disability blog, but I have to write about disability occasionally because it is such an important part of who I am. The challenge questions allow me to write about disability with intention, which is easier than answering a general question like, “Tell me about your disability.”

So, next Wednesday I will resume the challenge with an important question about disability and the media. I hope you will continue to read and comment on these posts. I enjoy the dialogue these challenges spark and know the questions will be fun to explore.

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.