Silhouette figures of a male and female with their legs crossed and their hands in front of their crotch as if they have to urinate.

My Drinking Problem

Because of the weakness caused by my neuromuscular disease, I have relied on other people to help me go to the bathroom for the past eleven years. Since 2007, I have timed my use of the toilet around when and where I will have proximity to an accessible toilet AND a Personal Assistant (PA), sister, cousin, friend, neighbor, or other kind person I could coerce ask to help me. I have restricted my fluid intake to coordinate, as best as I can estimate, with other people’s schedules and the times I will be near toilets I can safely use.

I wrote about my battle with “pee math” in this post. Since I have been so open about my methods over the years, I was surprised by the number of friends who did not know this was a routine for me. But, things are changing!

As you might remember, six weeks ago I had my suprapubic catheter tube (SP Tube) placed. According to the surgeon, the procedure “was textbook,” and went well. There were no complications from anesthesia. I remember being wheeled into the operating room with bright tropical fish painted on the walls. The breathing mask went over my face and the next thing I knew, I was waking up in the recovery room.

My SP Tube means I no longer need to sit on a toilet to urinate. Instead, urine freely flows out of the SP Tube to a collection bag. During the day, I wear a bag strapped to my leg. At night, I connect to a larger bag that hangs on the side of my bed.

I am now free to drink without the worry of how I will get on a toilet, or who will help me, or when it will happen. If I want to have an additional cup of coffee, I don’t have to think about where I will be in the afternoon and if I will have a PA with me to help me transfer on to the toilet. Now, I just drink the coffee! Or the juice. Or the water. Or the wine. Or whatever I want!

When I am at work, I can have as much water as I want! The first day I returned to work after surgery, I drank five, yes, FIVE, 16 ounce glasses of water. Granted, I had to dump my leg bag five times as a result. But I was not dehydrating myself because of lack of access to help and an accessible bathroom.

Drinking as much as I want, whenever I want, has created new challenges I have not had to face for several years. For the first time in a decade, I have to worry about accessible public restrooms.

I know – it sounds strange to hear a disabled woman admit she hasn’t worried about accessible public restrooms on a regular basis. I haven’t used them for a decade. Sure, I’ve always known it was an important issue. But, it wasn’t an issue for me so I spent my advocacy energy on other matters. At least, I did until the end of April.

Not all so-called “accessible” restrooms are actually usable. Disabled people know this but most non-disabled people do not. Most non-disabled people see grab bars next to a toilet and think the bathroom is accessible. Grab bars are not the only feature that make an “accessible” restroom usable. In addition to grab bars, accessible restrooms must minimally have:

  • Accessible sinks that can be operated with a closed fist (no faucet knobs that require grasping and turning)
  • Soap and paper towel dispensers and mirrors mounted at lower heights
  • Lever doorhandles or handles that can be operated with a closed fist
  • Doors that do not require more than 5 pounds of pull force pressure to open

The majority of bathroom doors open into the bathroom rather than out. This is probably so people walking in a hallway don’t get whacked by someone opening the bathroom door. While I understand that rationale, there are usually more people outside a bathroom than inside. If I can’t open a door because it requires more force than I can generate, I stand a greater chance of finding someone outside a bathroom to help me than I do inside the bathroom.

Since I had my SP Tube placed, I have been stuck inside six public restrooms because the door was too heavy for me to pull open. I now take my phone into the bathroom with me each and every time I go. If I am with a group of people, I ask them to come rescue me if I don’t return after five minutes in the bathroom. Last week I learned if there are multiple bathrooms, it is helpful to tell your colleagues which bathroom you are actually going to if you make this request. My friend Melissa dutifully came looking for me after I requested a rescue not knowing I was in the bathroom on the other side of the building. She sent me a text saying, You good? I just checked the bathroom and you are not there…

I am still learning how my body behaves with all of this extra fluid intake. There are still timing issues related to drinking, particularly when planning paratransit bus trips. It’s not fun to ride around on a bus for an hour with a leg bag that is full to the bursting point. Thankfully, I have not had any messes or spills.

Next week, I will return to the pool – the last step in resuming all of my activities. It will feel wonderful to return to the water, and I miss my swimming buddies.

Right now, I need to go grab a drink. I’m empty!

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Future or Present?

Today, December 3, is International Day of Persons with Disabilities (IDPWD), a day designated by the United Nations to increase public awareness, understanding and acceptance of people with disabilities. The theme for this year is Achieving 17 Goals for the Future We Want.”  The theme relates to the 17 Sustainable Development Goals which were recently adopted by the United Nations. Of particular note, this year marks the 10th anniversary of the Convention on the Rights of Persons with Disabilities (CRPD), an international treaty not yet ratified by my country but embraced by many other countries around the world.

While I think it is important to consider how we can work to incorporate people of all abilities into our plans for the future, I am too mired in what it means to live as a disabled person in the present to get excited over this year’s IDPWD theme. Personally, I spend too much time ensuring my basic needs are met here and now to think about what will happen next week, next month, next year.

Of course, I do worry about the future. I am concerned about what will happen if Medicaid, the federal government program which funds long term support services such as home care for most people with disabilities, is turned into a block grant program. I am concerned about how people with pre-existing conditions will access healthcare if the new administration is successful at it’s pledge to dismantle the Affordable Care Act. I hear stories like this NPR story about a 7 year wait to access services in Kansas, and I shiver, knowing I would be dead if I lost my services and had to wait 7 years for them to be reinstated.

But even though I worry about the future, I recognize the changes made in my lifetime which afford me access to the community in which I live. I was lucky enough to have been born in the United States at a time when education laws requiring free and appropriate education for all children were changing. As a result, I was “mainstreamed” and completed my education in the public community school alongside my nondisabled peers. I started college a year after the Americans With Disabilities Act, a crucial piece of civil rights legislation, was signed. I had access to paratransit transportation which allowed me to complete required internships and student teaching experiences. Throughout my professional life, I have had the right to request and receive reasonable accommodations which allow me to maintain employment. All of the sidewalks in my town have curb cuts, giving me freedom to explore and access my community without fear of not being able to cross the street.

Does discrimination still happen? Of course. I know there are times when I walk into a room of strangers and people notice the shiny red wheelchair attached to my butt, making assumptions about me based on that first visual impression of the wheelchair rather than me as an individual. At least once a month, someone tells me they would rather die than live as a disabled person, dependent on someone else to complete everyday personal tasks.

Are there still barriers to full participation? Of course. Yesterday I had to go to a local shopping mall and I was not able to leave when I wanted to because some idiot parked illegally in the access aisle next to my van, preventing me from deploying my van ramp and entering my vehicle. Lucky me, they were still parked there when the police arrived to issue a ticket. I hope the driver appreciates my holiday gift which comes with a $125 fine. ‘Tis the season for giving, after all.

Even though there are laws requiring places of public accommodation to meet accessibility standards, does that mean I can go anywhere I want? No, as I discovered last night when I stopped at a local business to pick up company gifts for my employer’s holiday party only to be greeted by steps. Granted, the staff were nice enough to bring the items out to me, but they won’t be receiving any more business from me or the company I represent. Money talks, and I refuse to give any of it to businesses which are not accessible to me.

Things are changing for people with disabilities, no doubt. Social media and technology make it easier for people with disabilities to share their own stories, in their own voices. I actually started today by helping to share tweets from Australian advocates when I woke at 5:15 AM my time and found the #criparmy and #pissonpity hashtags in several IDPWD posts. I debated writing my own post in recognition of IDPWD and ultimately decided I had to practice what I preach and use my own blog to signal boost the day.

I hope my regular readers will take some time this weekend to search the #IDPWD hashtag and read what disabled writers are sharing. There is also a Disability Blogger Linkup over at my friend Andrew’s blog, Disability Thinking. Listen to my friend Emily’s podcast, The Accessible Stall where she and Kyle tackle issues important to many in the disability community.

Why should you care about the issues we raise? Why do our advocacy efforts matter to you? Because everyone will either be a temporary or permanent member of the disability community at some point in life. And shouldn’t we all be concerned with basic human rights for everyone, regardless of ability?

Driving Me Crazy

A few months ago, I shared a post about how excited I was to be driving again after my femur fracture. Several of you responded with excitement and cheered me on in my continued rehabilitation. Then, a couple of weeks ago I casually mentioned how I was not independently driving. This caused several readers to reach out to me with questions about my driving. I have been meaning to write about this but other things interfered. The time seems right now, so let me take some time to explain what is up with driving.

For the past fourteen years, I have driven modified minivans. These vans have ramps on the side, which allow me to wheel my chair directly inside the middle section of the van, behind the driver and front passenger seats. I do not drive from my wheelchair. Instead, I lock my chair in place behind the driver’s seat. My van has a transfer seat base under the driver’s seat which allows the seat to rotate and move forward and back. For fourteen years, I have transferred in and out of my driver’s seat to drive. The only photo I have which somewhat shows this process is this picture snapped by my best friend at the start of a 2012 road trip.

A woman wearing a white shirt sits inside a gray minivan. The passenger side door of the van is open, and the woman is seated on a driver's seat transfer base, which is rotated facing the open door. She is looking out the door as she slides from her wheelchair into the driver's seat.
Half on the driver’s seat, half on the chair – almost ready to hit the road in my van Clyde! Yes, he has a name.

I do not drive from my wheelchair. I do not drive with hand controls. That’s right. I use my feet to operate the gas and brake, and use both hands to operate the steering wheel. If I drive from the driver’s seat, I do not require any further modifications to drive. Most people are surprised to learn this tidbit, and it plays a role in this story.

Things changed when I fractured my femur. As I shared on my blog, transferring in and out of my driver’s seat was difficult, and took time and rehabilitation. I was thrilled when I was able to get in my van and drive – and I still can do that. What I can’t do independently is transfer OUT of my driver’s seat back into my wheelchair.

Right now, I can get in my van and drive myself to my destination. I just can’t be certain I’ll be able to get out when I get there. What’s more, the effort and energy required for me to complete these transfers is frankly, not worth it. I have limited energy, and when I have to transfer repeatedly, I don’t have energy to do the other things I need and want to do in my day. The time has come for me to admit it is time to drive from my wheelchair.

Driving from my wheelchair may sound easy, but it is not just as simple as removing the driver’s seat. Everything changes if I try to drive from my wheelchair. In order to safely drive from my wheelchair I require a complex high-tech driving system. I have not had a new driving evaluation completed yet, but you can see a photo of a “complex high-tech driving system” which I will probably require by visiting this website or searching other sites. The last time I had a driving evaluation completed, the instructor told me I could drive from the driver’s seat without any modifications, or else drive from my wheelchair with “every bell and whistle, high-tech, electronic system known to man.”

Knowing I needed to make a change, understanding that I would not be able to put the system I will need in my current 2003 vehicle, I began the process for getting a new van. For those who are unfamiliar with the steps involved in buying an accessible vehicle in New York (my state), let me fill you in.

  1. Modified vehicles are expensive. The government requires most disabled people to live in poverty, with very little resources and savings, in order to maintain the services they require to meet their daily needs (see prior posts here and here for more information). This is why so many disabled people turn to crowd-funding and other fundraisers when they need to buy new vehicles. Rather than do that right now, I am using my state vocational rehabilitation program (ACCESS-VR) to assist me with the purchase of a new van.
  2. The ACCESS-VR process is a LONG process. I was approved for services in August (yeah!) but have yet to receive any services. On September 20, I received a letter telling me I was approved for a high-tech driving evaluation. I am drafting this post on October 5 and today I just received a phone call about scheduling my evaluation because….
  3. ACCESS-VR is a state agency. Any work the state pays for can only be completed by approved vendors. The state has one vendor – ONE VENDOR – in all of New York that is approved to conduct a high-tech driving evaluation. That vendor is in Rochester – 232 miles away from where I live on the eastern side of the state. I’ve spoken to Brian, the man who conducts these evaluations. He seems like a very nice man. During our conversation he told me he has been traveling almost non-stop. I believe it, because I know I am not the only disabled person in the state of New York who is itching to have her independence back. However, even though Brian is a nice guy, he is still 232 miles away. But….
  4. Brian is going to come to me for my driving evaluation! This is important, because since my femur fracture I can only go to the bathroom using the commode in my house. Well, I can go to the bathroom at my sister’s house because she purchased the same commode for me to use when I visit. Other than at my house and my sister’s house, I don’t use the toilet. This makes travel almost impossible. It makes a 232 mile trek across the state a logistical nightmare. If Brian didn’t come to me, I would have to wait even longer for a driving evaluation.

After this process, I can finally move to the process of actually purchasing the vehicle and equipment. That process deserves its own post, as this one is already over 1,000 words. I haven’t even begun to think about learning to drive with this new equipment, and having to practice for my road test with hand controls. I last took a road test in 1992 when I was 18 years old. I was driving my very first car, Grandpa A – a maroon Chrysler LeBaron with a bench seat in front. The man sent to accompany me on my road test was over six feet tall and had to sit sideways on the front seat because I had it to pull it forward to reach the pedals.

So, that’s the story with driving. If I am lucky, (read – if paperwork gets moved quickly and the process is not slowed down along the way, and I don’t have to wait months for driving instruction, and Scorpio goes in retrograde or something) I will be driving a new van by July of next year. In the meantime, I am rediscovering the joys of the local paratransit system and trying to practice patience. And drinking lots of wine.

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 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.