Wheelchair access symbol: white line drawing of a figure wheeling himself in a wheelchair on a blue background.

Things People Say and Do

Every so often, I’ll see a post with the title of “Things Not To Say to a Wheelchair User,” or something like that. I’ve even written a post along those lines. You can read it here if you missed it.

I don’t know why, but lately I have been on the receiving end of many comments I am sick and tired of hearing. When I share stories of these interactions with friends, they often express disbelief and wonder that I regularly have these interactions. But, apparently there are people who haven’t read the memo. This list of 5 pet peeves of mine is for all of those who STILL aren’t clear about what to say or do around wheelchair users.

1. NO SPEEDING JOKES!

We get it. Our chairs are cool, and they go fast. You might see us go whizzing by and think you’ll try to make a clever joke about us breaking a speed limit. DON’T make whatever comment you are about to make. Just don’t. It’s not original. It’s not funny. I spent the first 29 years of my life being the slow one. You bet your ass I’m going to speed and go fast now that I have the ability to do so!

2. We’re not going to run you over!

How many times have you walked down a hallway and encountered a wheelchair user approaching you from the opposite direction? Do you just keep walking or do you flatten yourself against the wall in fear the wheelchair user will run you over? When I used to work in an office building, this would happen to me at least once a week. I would be rolling down the hall towards my office, see a person walking towards me and get ready to smile. I stopped counting how many people literally stopped walking and put their back against the wall after it happened for the tenth time. It wasn’t a narrow hallway. At least four people could walk comfortably side by side down this hallway. Yet, strangers would cower in fear whenever I approached. One man even jumped into the stairway to avoid me – while I was still 20 feet away! He stood there until I went by before coming back into the hallway and resuming his walk to the cafeteria.

Here’s the thing – I have control over my chair. When I am going from place to place, I am constantly aware of what is around me and make minor adjustments to my pace and direction accordingly. Just like most people who walk, I am usually able to avoid potential barriers that might be in my intended path. I am not going to run you over unless you come to a sudden and unexpected stop directly in front of me without warning. Or unless you try to make a stupid speeding joke. If you do that, you deserve to have your toes run over. Twice.

3. I don’t care about your relative or friend who also uses a wheelchair, and

4. I don’t dream about a wheelchair that can climb stairs.

Sometimes, people will try to build a connection by telling me right away about someone else they know who also uses a wheelchair. Usually, the conversation goes like this:

Stranger: Hey, nice wheels. My neighbor just got a new chair like that.

Me: Thanks.

Stranger: Her chair can tilt and recline so she can take a nap in it. Does yours do that?

Me: No.

Stranger: Yeah, it’s amazing what wheelchairs can do. Have you seen that YouTube video of the chair with treads climbing stairs? I bet you want one of those!

Me: No, I’m good with mine thanks. (End Scene)

I’m not impressed by the fact that a person knows another wheelchair user. In fact, I’m more surprised when people tell me they don’t know a disabled person. Since approximately 20% of the population lives with a disability, chances are good that everyone knows at least one disabled person. So, telling me you know another wheelchair user as a means to form a connection really doesn’t help me feel more inclined to open up.

As for wheelchairs that can climb stairs – well, if we simply built or modified our environments so people of all abilities could participate in equality, we wouldn’t need to waste money on resources to eliminate barriers. I don’t need a wheelchair that can climb stairs. I just need architects and planners to consider that not everyone has the ability to climb stairs, and then develop inclusive plans and designs. I am more disabled by a society that does not consider and plan for my access needs than I am because I have a wheelchair that doesn’t climb stairs.

5. Just because we’re disabled doesn’t mean we know all the other disabled people!

Let’s go back to the scenario of a stranger telling me they know another wheelchair user. At least 50% of the time, once the stranger tells me they know another wheelchair user they then ask me if I know that person. Here’s the thing – I don’t know every other wheelchair user! Sure, I know LOTS of people. I have a large circle of support and am connected to others in the disability community. But, despite what my friends and coworkers may tell you, I don’t know everyone.

I could easily continue with this list, and maybe some of my readers will share there own experiences in the comments. For now, I’ll close with this advice.

Everyone wants and deserves to be treated with respect. While I do my best to assume good intent in the actions and words of others, the little digs add up over time and become tiresome. Next time you are uncertain of what to say or do, try a simple smile and “hello.” That always seems to work for me.

When Will I Get Carried Away?

Thursday morning as I ate my oatmeal and scrolled through my Twitter feed, I noticed a story with the headline American Airlines Checked My Dignity at the GateI opened the post which was written by Mark E. Smith, or WheelchairJunkie as he is known to me via social media. In case you missed it, here’s a synopsis.

Mark is a power wheelchair user who travels frequently for his job. His recent trip with American Airlines earlier this week started much like any other trip. After working for 5 days at a trade show in Southern California, he was ready to return home to his wife and children. Being familiar with the process of flying while disabled, Mark arrived at his gate ready to pre-board, with his ticket in hand and wheelchair tagged for baggage. He was assisted to his seat and waited for departure as the other passengers boarded around him.

However, Mark didn’t get to take that flight home. Here is how Mark described what happened next:

“Seated in row 24, my attention was called away from looking out the window, to a large group of American Airlines’ flight attendants, gate agents and ground crew – a sea of varying uniforms and two-way radio chatter – coming up the aisle. Without speaking to me, they asked the two women sitting next to me to move from their seats, explaining that they were removing me from the plane. I was immediately alarmed, not knowing what was going on, and asked what the issue was? Everyone in the American Airlines group paused and the entire plane was voiceless – just the mechanical hum of the 737.

I looked from one person to the next to the next, and all just stared. Finally, a flight attendant exclaimed, “This plane isn’t leaving without him!” and sat beside me. Her sudden burst of emotion confused me even more. I was then told that communication between the captain and ground crew instructed that he wouldn’t accept me and my wheelchair on the flight.

I was dumbfounded. American Airlines personnel were refusing to transport me because I am a person with a disability who uses a wheelchair.”

This is not the first time I have heard of a disabled person being refused passage on a flight. Back in 2010, US Airways escorted frequent traveler and motivational speaker Johnnie Tuitel from a flight. Tuitel was in his seat before airline personnel told him he would not be able to fly without a companion, something he does regularly. But, according to this article on CNN:

“US Airways spokeswoman Michelle Mohr said Tuitel was not deemed unfit to fly alone just because he uses a wheelchair.

‘He did not appear to have the ability to assist himself in evacuating in the event of an emergency. He appeared to have a lot of difficulty moving,’ Mohr said.”

Incidents like this just don’t happen in the United States. In 2015, Luke Kenshole was escorted off a British Airways flight in London after all passengers had boarded. His crime? Being disabled. Luke has cerebral palsy and uses a wheelchair. According to this article on the Daily Mail:

Luke was on the plane before anyone asked him whether he was able to take himself to the toilet, and he said he needed assistance to get onto the wheelchair.

He was then told he would have to get off the plane for health and safety reasons.

Just for the record – I flew from Los Angeles, California to Melbourne, Australia in 2015. I was not able to take myself to the toilet on the plane during the 15 hour flight. Since I pre-boarded the plane before the other passengers, I spent over 16 hours in seat 49C. I was not kicked off the plane for health and safety reasons, although choosing to hold my pee for 16 hours was probably more detrimental to my health than anything else I did that year!

On Thursday, I shared Mark’s post on social media. Some of my friends expressed outrage. Some questioned how it is legal for an airline to act this way towards a disabled passenger. I wanted to answer this question so I started to do some research. I am not a legal expert, and if any reader has insight I welcome you to share it with all of us.

First off, the Americans with Disabilities Act is not the law which governs airline behavior when it comes to disabled passengers. The Air Carrier Access Act governs airlines and provides regulations related to treatment of passengers. According to the U.S. Department of Transporation rule (Title 14 CFR Part 382), airlines are prohibited from discriminating against people with disabilities. The following, taken from the U.S. DOT website, is a few of the prohibited practices:

  • Airlines may not refuse transportation to people on the basis of disability. Airlines may exclude anyone from a flight if carrying the person would be inimical to the safety of the flight. If a carrier excludes a person with a disability on safety grounds, the carrier must provide a written explanation of the decision.
  • Airlines may not require advance notice that a person with a disability is traveling. Air carriers may require up to 48 hours’ advance notice for certain accommodations that require preparation time (e.g., respirator hook-up, transportation of an electric wheelchair on an aircraft with less than 60 seats).
  • Airlines may not require a person with a disability to travel with another person, except in certain limited circumstances where the rule permits the airline to require a safety assistant. If a passenger with a disability and the airline disagree about the need for a safety assistant, the airline can require the assistant, but cannot charge for the transportation of the assistant.

Let’s look at that first bullet point. When was the last time you heard the word “inimical” in real life? In case you don’t know what it means (like me) I’ll save you the trip to the dictionary. Inimical is an adjective which means likely to cause harm or have a bad effect. Used in a sentence: The disabled passenger was bodily removed from his seat because the pilot thought he was inimical to the safety of the flight from Los Angeles to Philadelphia.

Secondly, every airline provides passengers with a contract, usually referred to as Conditions of Carriage. You know that legal mumbo-jumbo you ignore when you purchase your tickets? Yeah – until yesterday I had never read that either. But I did read the American Airlines Conditions of Carriage and found a section called “Acceptance of Passengers” which listed various reasons American may refuse to transport or may remove a passenger from a flight. Number 5 on that list?

Your physical or mental condition is such that in American’s sole opinion, you are rendered or likely to be rendered incapable of comprehending or complying with safety instructions without the assistance of an attendant.

Side note – number 11 is an offensive body odor not caused by disability or illness. I know for a fact that rule gets ignored often! Back to the issue of being too disabled to fly…

Let’s suppose the pilot thought Mark was inimical to the safety of the other passengers on the flight. I don’t know why Mark, a disabled adult, might be more inimical than an unaccompanied minor who might not be able to independently follow directions during an emergency. I have never witnessed an unaccompanied minor being physically lifted and restrained in an aisle chair and removed from the cabin of an aircraft. Would people speak up if that happened? Nobody spoke up for Mark.

“As I scooted across the seats toward the crowd, having to transfer into a dolly-like chair so that they could roll me off of the plane, all of the other passengers watched, silent. Although many clearly heard that I was being removed because American Airlines didn’t want me and my wheelchair on the flight’s manifest, no one questioned why, in 2017, a businessman with a disability was being ejected from a plane? In that moment, I realized the gravity of it all: I was being stripped not just of my civil rights, but of my humanity. For the first time in my life, in the microcosm of that American Airlines Boeing 737, I was discarded as a human being – literally.”

I almost cried when I read this paragraph. Having been late for connecting flights due to weather delays, I have endured the stares when I am carried onto a plane after all other passengers have boarded, the glares and sighs from those around me who are inconvenienced by having to move so I can be lifted to my seat. I cannot imagine what it would be like to be forcibly lifted and removed like a criminal, without an explanation from the crew.

Thankfully, Mark was able to get home on the next American Airlines flight to Philadelphia. His experience was featured on his local television station. You can hear Mark talk about it in this report and you can read what New Mobility had to say about it here.

Every time I fly, a part of my mind wonders how I will react if the crew challenges whether or not I will be inimical to the safety of the flight. Typically, once I am settled in my seat on the plane, the flight attendant comes over to ask how they might be of assistance. If I am flying without a companion, I let them know I might need the plastic bin I use as a footrest in flights moved when we are in the air. Usually, the stranger seated next to me offers to help once I introduce myself and explain how I’m counting on them to secure my oxygen mask if the cabin loses pressure.

The simple fact is once I am on the plane, I am not able to do much for myself. I can usually put in my own earbuds. If I have a tray table in front of me, I am able to hold myself upright so I can eat and drink. Other than that, I am unable to do much more than sleep and count the hours until I can get back into a comfortable seat.

My fear is that one day, an uneducated pilot or crew member will see me and decide I am too much of a risk. When they come for me with the aisle chair, will anyone speak up for me and my humanity?

Strengthening My Advocacy Muscles

I have never considered myself a political activist. Sure, I have advocated for causes I believe in and participated in legislative visits and meetings with my elected officials. But I have not attended rallies or marches. I have never chained myself to an escalator or thrown myself in front of inaccessible buses, like other disabled activists I admire and respect.

However, because of my job and my situation as a Consumer who uses Consumer Directed Personal Assistance to remain independent in the community, I am in a unique position to speak to the importance of adequate wages for home care workers. Last Tuesday, Bryan O’Malley, the Executive Director of the Consumer Directed Personal Assistance Association of New York State, and I spoke about this issue with Liz Benjamin on Capital Tonight, a political news program broadcast statewide in New York on Time Warner Cable. You can watch the interview by clicking on this link.

Then, yesterday I did something I have never done. I gave testimony at the New York State Assembly Hearing on Home Care Workforce in Albany. The hearing, which was held by the Assembly Committees on Health, Labor, Aging and the Task Force on People with Disabilities, brought together people from licensed home care agencies, state and county offices of health and aging, managed long term care plans, fiscal intermediaries, unions, home care workers and Consumers. Over thirty people spoke at the hearing, which went on for more than ten hours.

I was the first Consumer using home care called to speak at yesterday’s hearing (there was a hearing in New York City last week). Some of my friends have asked me  about my remarks, and since they will now be part of the public record, I am happy to share them here. You can find them below.

As I sat and listened to the many speakers yesterday, I noticed some consistency among the comments:

  • Recruiting good home care staff is a challenge around the state, particularly in rural areas where the distance between Consumers may be 15-20 miles.
  • Many elected officials still don’t have a clear understanding of Consumer Directed Personal Assistance, and why it is a vital option for many people who rely on home care.
  • When home care agencies increased wages for home care workers, they were able to recruit and retain staff. But, since most long term care is paid for by Medicaid, without the state increasing funding, agencies and fiscal intermediaries are not able to support higher wages.

What next? I will continue to work with my employer and with other advocates to make sure the Consumer voice is heard. We must ensure that legislators understand when they are talking about this matter, they are talking about real people, with real families and jobs, with real needs. I raise my voice because I know I have peers who may not be in a position to be able to speak out.

For those who are interested in my testimony, here is what I said yesterday at the hearing:

My name is Denise DiNoto, and I live in Waterford. For the past 10 years, I have managed my home care services as a Consumer through the Consumer Directed Personal Assistance program. I am here today because of the difficulties I face ensuring I have adequate staff.

As a Consumer, I get to be the “CEO of me,” in charge of personnel. I recruit, train, supervise and manage the staff I hire to be my Personal Assistants, or PAs. As their employer, I am given the maximum amount of independence, allowing me to live independently. Because I have PAs, I am able to work full time, volunteer for causes I believe in, and serve my community as President of my Rotary Club.

My PAs are dedicated, kind and caring workers. They serve as my arms and legs, helping me with every activity of daily living. From 6 AM every day when the first one enters my house until 9:30 PM when the last one leaves, they provide vital services such as getting me in and out of bed, on and off the toilet, showering, dressing, and grooming. They prepare my food, do my laundry and grocery shopping. They open my medications, clean and change my bi-pap supplies, and help me perform daily range of motion and exercises.

Recruiting and retaining staff has become increasingly difficult since I started using Consumer Directed Personal Assistance ten years ago. One of the key reasons for this is the low wage I am able to offer my staff. Some of my PAs have been employed with me for ten years, and have only seen one raise during that time. That is not because they do not deserve a raise. It is because the Medicaid reimbursement to my Fiscal Intermediary has not permitted a raise. Consumer Directed Personal Assistance is a Medicaid funded program, so if the funding to Fiscal Intermediaries, the agencies we must use to help us pay our employees, is not adequate, the wage we pay our Personal Assistants is not going to be attractive.

The job of a Personal Assistant is deeply intimate, and is not for everyone. I have been forced to retain workers who showed up consistently, but were not quality workers, simply because having someone was better than not having anyone. This action brought about disastrous results last year when one of my former PAs dropped me during a transfer because she did not listen to me or follow my instructions. I fractured my femur, which required a lengthy surgery, and then spent a total of 4 weeks in the hospital and rehabilitation. I have been continuously recruiting staff since returning home last February.

At any time, I usually employ 14 PAs to cover the 70 hours of care I am authorized to receive each week. Of these, 6 are my primary workers, with the rest being back up or “emergency” staff. In just the past year, I have had 6 PAs leave my employment, and have been continually recruiting new staff since February 2016. When I asked my former PAs why they left, the number one reason was that they were not earning enough money.

Without my staff, I would not be able to live in my house. I would not be able to work. I would not be active in my community. I would not survive.

I respect the work performed by my staff, and home care workers across our state. I would like New York State to respect that work, by allowing Consumers like me to pay an adequate wage. Then, we can more effectively recruit and retain quality staff, keeping us in our communities and homes where we belong.

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.

Why I Have Not Written About Japan

On July 26, a day when I should have been celebrating the anniversary of the Americans with Disabilities Act, I was attempting to process the news of an unimaginable hate crime. Instead of gathering with my disabled peers in joy, I was sobbing as I imagined what the victims had experienced during and after the massacre in Sagamihara, Japan.

You haven’t heard about the massacre? I would bet you aren’t the only one.

Around 2:20 AM, a former employee of a residential facility for the disabled in Sagamihara committed the largest mass killing in Japan since World War II. He broke into the building, tied up the staff members, and stabbed the disabled residents, killing 19 and injuring 26. The victims ranged in age from 18 to 70, both male and female. Most were stabbed in the neck. throat, and chest as they slept in their beds.

I waited for the “mainstream media” to cover the story. After all, hate crimes and terrorist acts have been receiving a great deal of attention. Nice, Brussels, Orlando, Paris, Munich – I’m guessing you recognize recent stories related to these places.

Instead, I read stories like this Japan Times article which described the crime as a “mercy killing.” According to the article, the killer believed he was providing mercy to the victims’ caregivers because “it would be better if the disabled disappeared.”

There was no mass outcry of horror and disbelief. There were no large expressions of sympathy and solidarity.

Then, slowly the messages began to come from the worldwide disability community as they wrote social media updates, blog posts and essays. Reading them, I was grateful for these brave writers who took the time to capture the loss, rage, sadness and fear so many of us felt. I was able to share their work when I lacked the energy and stamina to compose my own response to this terrible act.

I tried to write. I attempted to find words to express my emotional response. If ever there was a time when I needed to add my voice to help draw attention to an event, this was it. But whenever I tried, I got stuck in the same mental prison.

Those nameless victims? They were me. If I had been a resident in that facility, I would have been one of those who went to sleep one night in July only to have my throat slashed while trapped in my bed, unable to escape injury or death.

The victims’ only crime – my only crime? Being born disabled. Less than. A burden. Incompetent.

Murders of disabled people are incorrectly called “mercy killings” by media outlets because of the ableist belief that disabled lives are so invaluable or unbearable that our murders are acts of mercy. Don’t believe me? Remember Tania Clarence – the mother who killed her three disabled children and was only charged with manslaughter? I wrote about the case in this post. How about the mother who received a charge of involuntary manslaughter for VOLUNTARILY poisoning her disabled daughter and killing her? If the victims of these crimes had not been disabled, would the charges have been more severe?

Writing about the massacre has also been difficult because my own personal care situation has been strained for the past month. Last summer – almost exactly a year ago – I wrote about how life is different when personal needs are met. Just this past month, I have had two Personal Assistants (PAs) out of work for hospitalizations; one out due to a broken foot; one out due to complications with her pregnancy; and one out due to a family emergency. These are legitimate reasons to be absent from work. But my need to use the toilet, get dressed, eat, get in and out of bed, work, live – insert action of your choice here – does not stop just because I do not have my regular staff available to work for me. Yes, I have other staff but they are not always available to work at a moment’s notice. If it were not for the support and assistance from family and friends, I would have no choice but to rely on institutional care like my disabled peers in Japan.

Facing a crisis in personal care, knowing that I would be institutionalized without the generosity and kindness of a support network I have carefully cultivated, and reading about the murder of innocent disabled people in a setting where they should have been safe – well, writing has not been a priority in my life. It is a shame, because I need the therapeutic outlet of writing even more when I am stressed and emotional.

I really need to write. I am a writer – and writers need to write.

So, I set a goal to post something – anything – about Japan this weekend. I am not certain this post captures everything I want to say about it, but at this point it is the best I can do. To the friends and family who have reached out to me since the tragedy in late July, I appreciate your kind words. Thank you for sharing stories and for helping to call attention to this tragedy. We owe it to the victims to continue to fight against the stigma and negative attitudes towards the disability community. We must ensure all life is valued, so nobody has to fear that society views their life as a burden or expendable.

Because that disabled person trapped in an institutional bed? That person is not just me. It’s you.

Why I am an Ally

I am an ally because of:

  • Alex – who is kind and loyal
  • David – who is always there to offer support and encouragement, and unconditional love (except for that one night in college when my friend and I called him to help us after we discovered $1.50 pitcher night at a local dive bar and drank more than we should have – but we forgave him.)
  • George – a forever friend who is teaching us about determination and resilience as he continues to recuperate from a serious health crisis
  • Kelly – who courageously lives her life on her own terms
  • Bill – who taught me the importance of saying thank you today to the people who have influenced your life, before time runs out
  • Andy – who changes tears of sadness to tears of laughter with what most would consider inappropriate jokes
  • Tony – who made me start singing again after a two year silence
  • Al – a teacher to many, in and out of his classroom
  • Kevin – my confidant and playmate at many childhood family gatherings
  • Tom – who fearlessly chased his dream across country and is living large, proving wrong all those who doubted (I never doubted!)
  • Dominick – who has helped me become a stronger advocate through his actions and example
  • Becky – who encourages me with her creativity and optimism
  • Howard – who answered the questions of a naive college undergraduate who was struggling to be a good ally (I hope I’m doing better!)
  • Andrew – who brings #deliciouslydisabled to people each and every day
  • Joe – who manages to surprise me with Facebook comments just when I need a smile
  • Sue – who sang harmony with me for staff birthday sing-alongs at Riverview (which is not along the river, and has no views)
  • Amanda – who inspires me with her success at reaching personal milestones
  • Sam – who teaches me to be a stronger writer by sharing his experiences with honesty and vulnerability
  • Liz – who always makes meetings more fun with her wit and dry sense of humor

I am an ally because everyone deserves to live their lives free from fear, with dignity and respect.

I am an ally because I know what it feels like to be discriminated due to the way you were born, a part you cannot change, the part which makes you uniquely who you are, the part others cannot accept even though you embrace it as your identity.

I am an ally because I was taught to love others as I have been loved, not to hate.

Love is love.

And the world needs more love.
Photo of a hand with painted nails. Each nail is a different color of the rainbow with the thumb being red and pinky being blue.

Image of a lightbulb floating against a blue sky and clouds. There is a tree and birds flying inside the bulb.

Conservation of Energy

When I was younger, I thought I would grow up to be a music therapist and structured my high school course work to match my projected career path. I took only the minimum required science courses – earth science, biology and chemistry – and not physics. I stayed away from physics because I could never remember all the formulas and equations. Density, momentum, power, work and energy – my brain hated this math dressed up as science. Even now, the only physics concept I relate to is the law of conservation of energy. This law states energy cannot be created nor destroyed, merely transformed from one form to another.

I relate to the law of conservation of energy because I live my life juggling energy. I talked about this before in this post when I wrote about Christine Miserandino’s spoon theory and how it applies to my life. I have “good energy” days and “bad energy” days. Unfortunately, I cannot predict when either will occur. Sometimes I will have multiple meetings scheduled for work, but I wake up and discover it is a bad energy day. When this happens, I know I must conserve what little energy I have so I can accomplish the most and still have energy to get home, go to the bathroom and get to bed. Sometimes I will have nothing planned, but I wake up and feel full of energy. When this happens, I try to accomplish as much as possible without overdoing it and accidentally causing the next day to be a bad energy day. Since my femur fracture in January the energy required to complete daily tasks has increased, forcing me to juggle enjoyable pursuits such as writing, with required activities, such as employment, with creativity.

Lately, my energy level has been more depleted because I am once again struggling to maintain adequate Personal Assistant (PA) staffing. I’ve written before about the importance of good PA staff and it turned out to be one of my most popular posts. This tells me I am not alone in my struggle. If you haven’t read that post about how my life is different when personal needs are met, please take a moment to go read it now. I’ll wait. Really – go read it.

In physics, objects have potential energy. I remember it as the stored energy of an object in relation to another object. I know, that definition is too simplistic, but remember I didn’t do physics. A coiled spring has potential energy, as does the string of a bow which has been pulled back by an archer. Potential energy is influenced by force. In my case, my body has potential energy and my PA’s impact the level of potential energy each day through the force of their work.

Physicists describe work as the force required to move an object. There is a formula to calculate work but as I’ve already explained, I am bad with formulas. What I do know is work transfers energy from one object to another. This I understand, because when I have adequate PA staffing, their work creates energy in my body. When my PA shows up on time in the morning to help me get out of bed, go to the bathroom, shower and get dressed, I have more energy. When my PA comes as scheduled to help prepare my meals and perform basic housekeeping, I have more energy to pursue those activities which matter to me (employment, writing, crochet, and more) because I have conserved the energy I would have otherwise spent on other tasks. Likewise, when a PA is late for a shift or calls out at the last minute, I am forced to waste expend energy on locating a replacement so my basic needs are met. And when the PA who is scheduled to assist me at the therapeutic pool with my outpatient physical therapy has car trouble or difficulty with childcare, I am unable to engage in exercise which helps build strength crucial to my ongoing recuperation.

Other outside forces impact my energy level. I have more energy when I am warm than when I am cold. The physicists might try to apply some law to this (thermodynamics?). To me, it’s as simple as cold causes pain and pain makes movement more difficult. I also rely on mechanical and electrical energy frequently – my power wheelchair, my electric bed, the transfer seat base in my van.

My life is a constant struggle for energy. Energy is a precious commodity which must be conserved and managed in order for me to engage in my community. When the force and work required to maintain my energy is not consistent, I go into survival mode. I stop doing the activities which bring me joy so I can preserve the energy required to get me through basic daily tasks. Over time, this drain on my energy creates stress on my mental and physical health.

Suffice it to say – I’m still recruiting new staff. Maybe I need to change the job title to “Energy Conservation Technician” instead of “Personal Assistant” to more accurately reflect the true value of the work.

This is the colourful banner which reads "Blogging Against Disablism." The square is comprised of smaller squares of different colors. Most squares show stick figures standing. There are two white squares which show a wheelchair and a stick figure with a cane.

Otherwise Healthy

This post is shared as part of Blogging Against Disablism Day 2016. To learn more about this day and read other posts, visit the link.

My friend Lynda wrote a book entitled Otherwise Healthy after her diagnosis of breast cancer. The book is a resource and guide for those facing a health crisis. Although it is geared towards cancer, the chapters can apply to anyone who finds themselves living through chronic illness or disease, endless doctor visits, tests and treatments.

Lynda came up with the title after reading one of her medical reports which said (I’m paraphrasing), “This otherwise healthy woman comes to me after being diagnosed with breast cancer.” When I read this story in the book introduction, it struck me that I have never seen those words written about myself. I have never heard a doctor say I am “otherwise healthy.”

A part of me (the part that understands the medical model of disability which views disability as a deficit which must be cured) can understand why medical professionals do not consider me a healthy woman. I have lived with a progressive neuromuscular disease all of my life. I have used a wheelchair for 100% of my community mobility since 1994. I require the aid of Personal Assistants (PAs) to complete activities of daily living such as bathing, dressing, or using the toilet. Without assistance from my PAs, I would be unable to live independently and would require institutional care.

One of the reasons doctors may not view me as “otherwise healthy” is because I am an outlier when it comes to health and disability. According to the United States Centers for Disease Control and Prevention, disability is associated with health disparities. I took a look at the data for my home state (New York) and found I am not the average when it comes to health and disability. If you consider metrics of health such as blood pressure, cholesterol, weight and lifestyle choices, I am a very healthy woman compared to other disabled adults in New York. My blood pressure and cholesterol are within recommended ranges, unlike the 40 % of disabled adults in New York who report high blood pressure and the 43 % who have high cholesterol. I have lost almost ten pounds this year, bringing me back to a healthy weight, unlike 40% of disabled adults in New York who are obese. For the first time in almost twenty years I am exercising almost every day, something only 13% of my disabled peers claim. I have never smoked, unlike 30% of disabled adults in New York who smoke regularly. While I do enjoy wine I drink alcohol in moderation, unlike 15% of disabled adults in New York who report binge drinking (this is less than the 19% of nondisabled New Yorkers). I do not use any other drugs and do not take any prescription medications. Yes, I am a forty-two year old disabled woman who does not take any prescription medications. Whenever I see new doctors, they are always amazed by this. More importantly, I consider myself to be in good health, unlike 43% of disabled New Yorkers who consider their health to be fair or poor.

So if I consider myself to be in good health, why is it difficult for medical professionals to view me as “otherwise healthy?” I think it is because the doctors, who are still mostly nondisabled men, have difficulty seeing anything but my shiny red wheelchair. They do not view me as a complete person, a common complaint of many of my friends with various disabilities. Doctors see the disability first and think this is the one factor that must influence my health most significantly. They see the disabled woman – weak and contracted muscles, needing assistance, not curable, not fixable – instead of a woman with a full-time job, volunteer obligations and hobbies. Thus, somehow they jump to the conclusion my health must be poor because I have been living with disability my entire life.

When medical professionals wrongly assume I am unhealthy just because I am disabled, they often make other false assumptions about me. I have had doctors and nurses look at me with shock when they discover I have been sexually active. I know some of my family members read my blog and may not want to think about this – but medical professionals should not assume someone is celibate just because they have a disability. Several doctors looked at me askance when I asked about birth control options. Let’s not even talk about the many times I tried to raise the topic of having a tubal ligation, only to have multiple doctors flat out refuse to discuss it as an option.

If doctors viewed their disabled patients as having the potential for good health, the statistics on health and disability might change. If medical professionals looked at their disabled patients as complete people, not just a disease or disability, they would start treating the entire person instead of just the disease or disability. When I was hospitalized due to complications after my gallbladder surgery three years ago, doctors and nurses treated me differently after my sisters encouraged them to stop looking at my wheelchair and start seeing me. I am fortunate to have had advocates to speak on my behalf. I worry about those who do not have such support systems.

One way to help medical professionals view disabled patients as complete people is to introduce the social model of disability in medical training. The social model, which does not view disability as a medical condition or defect in need of a cure, seeks to change society to better meet the needs of the disabled. The social model recognizes my mobility impairment will not go away, does not need to go away for me to be a complete person. Rather, society needs to adapt to accommodate my needs so I can participate fully in my community. I do not know how to incorporate this model into western medical training which is built around helping doctors learn how to “fix patients.” Perhaps I’ll explore that next year for Blogging Against Disablism.

Until then, I hope someday my doctors will view me as “otherwise healthy.” That is how I view myself – and it is how I deserve to be seen.

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.