A lady with brown hair is in a pink sleeveless t-shirt out walking in her wheelchair on a bright sunny day. She has a towel on her lap and gloves on her hands. The text on top of the image reads: “Rethink the way you speak about walking!”

Exercise for Every Body

Last month, I wrote this post in response to an article about walking as a means to improve health and fitness. When I hit “publish” I had no idea what type of reactions, if any, my readers would have. My fellow wheelchair-using readers all said, “Right on!” Or something very similar.

Then, more and more people started asking me about options for physical activity for people with disabilities. I started to provide information when a friend posted this comment on my Facebook page:

Why don’t you research and write your own article on fitness for those with disabilities?

Before long, the idea took hold. Why don’t I do more than just complain? While I am not an expert on physical fitness, in my prior career I did spend time researching and writing about health and wellness for people with disabilities. So, here goes my attempt to tackle this topic. Keep in mind, I am not a person who loves to exercise. In fact, I am pretty much a person who would rather do data entry into an Excel spreadsheet before exercising. And I HATE data entry.

Whenever anyone asks me about fitness for people with disabilities, I start by referring them to the National Center on Health, Physical Activity and Disability (NCHPAD), a “public health practice and resource center on health promotion for people with disability.” NCHPAD works to improve health and wellness for people with disabilities through increased participation in physical and social activities. Their website is a wealth of information and a great resource for people of all ages and abilities.

I really like their campaign How I WalkThe movement aims to rebrand the word ‘walking’ so everyone is included in the many walking initiatives. Through images, like the one below, videos and social media messaging, the campaign hopes to show how walking is an activity for people of all ages and abilities – even those of us who cannot “walk” in the traditional sense of standing on two feet and putting one foot in front of the other.

A lady with brown hair is in a pink sleeveless t-shirt out walking in her wheelchair on a bright sunny day. She has a towel on her lap and gloves on her hands. The text on top of the image reads: “Rethink the way you speak about walking!”

I especially like this campaign because I regularly go for walks in my community. From April to October, as long as the weather allows, I spend at least part of every weekend taking walks on many of the local bike paths and trails. My favorites are the Old Champlain Canal Trail and the Erie Canal. Parks & Trails New York has a great interactive map for people who want to explore the Erie Canal, which stretches across New York State. I enjoy being out in nature, and the trails allow me an accessible opportunity to explore. And while I may not be actively wheeling a manual chair, the simple act of maintaining balance and equilibrium on an uneven surface still requires muscle use. Trust my knees and hips on that!

Photo of a walking shaded walking trail next to a canal. Tall green deciduous trees line both sides of the path.
One of my favorite paths, the Old Champlain Canal Path is mostly accessible.

Sometimes people hear “exercise” and immediately think “gym” or “fitness center.” While I do have many disabled friends who do exercise regularly in fitness centers, that has never really been an option for me. My physicians have discouraged extended land exercise for me, so the benefits of joining a gym do not merit the expense. Instead, with the help of my Personal Assistants (PAs) I perform regular stretching at home and use exercise bands a few times a week.

The one activity my doctors and physical therapists agree is great for me is aqua therapy. Three mornings each week, I go to a local therapeutic pool and complete an exercise routine focused on strength and cardio. I’m not going to lie – I love the pool but I still hate exercise. I go regularly because it reduces pain and makes me feel better to spend three hours each week in warm water. I am privileged to have the income to be able to afford a membership, and PA staff who can accompany and help me. These are obstacles for many of my disabled peers.

Exercise doesn’t need to be organized or expensive though. I have friends who exercise by turning up the radio in their house and dancing to their favorite tunes. Other friends of mine count on their intimate moments with partners to burn some extra energy.

Any movement that gets your blood flowing and heart pumping is better than no movement at all!

Telling My Medicaid Story

For several months, my disabled peers have been sharing their personal stories about Medicaid. I read Vilissa Thompson’s story and Jensen Caraballo’s story, both published on the Center for Disability Rights blog. I watched the videos published on the Disability Rights Education and Defense Fund website. I cheered for my friend Alice Wong when her OpEd “My Medicaid, My Life was published in the New York Times.

I have written about Medicaid on this blog before. When I was participating in the Redefining Disability blog challenge, I wrote about it here, and I also wrote about how my need for personal assistants impacts my life here, and I wrote about it again here.

I wasn’t feeling the urge to write about Medicaid again but then last week happened. On Thursday, United States Senate Majority leader Mitch McConnell (R – KY) released the Better Care Reconciliation Act of 2017 (BCRA), the Senate’s version of legislation to repeal the Affordable Care Act. The majority of the bill is focused on changes to Medicaid. There are several websites that provide summaries of these proposed changes, such as HealthAffairs.org, the Kaiser Family Foundation, and NPR.

Did you catch the other big news story in US media on Thursday? Did you notice the story that appeared on CNN, MSNBC, ABC and many local affiliates across the country? The story that was later featured in Rolling Stone, TheHill.com, USNews, and Pacific-Standard among others?

For a few days this week, disability made the headlines thanks to advocates who literally put their bodies on the line. Thursday morning, in anticipation of the release of the Senate bill containing cuts to Medicaid, a group of about sixty disability rights activists gathered outside Senator McConnell’s office to stage a “die-in.”

Those gathered are members of ADAPT, a grassroots disability organization that has been fighting for disability rights since the 1970’s. What – you’ve never heard of ADAPT? Maybe you missed the 20 minutes Rachel Maddow spent on her show Thursday explaining ADAPT history and providing perspective on the disability rights movement. In case you didn’t catch it, you can watch it now. It doesn’t matter if you’re not a fan of Rachel (I’m not a fan either), just watch the video.

I am young enough to remember life before the Americans with Disabilities Act (ADA). I remember being carried on and off buses by my friends on school trips because we did not have an accessible bus. I remember taking walks and zig-zagging across the street every few blocks because not every corner had a curb cut ramp. I remember the sense of relief when I learned I could not be fired because of my need for a reasonable accommodation from my employer. I remember telling my parents about a new program called Consumer Directed Personal Assistance – a program that would allow me to hire home care workers who would assist me with my basic care needs when I was no longer able to perform these tasks independently. I remember my mother tearing up as she realized I would be able to manage my care in the community.

I live in the community because Medicaid, the program threatened by the BCRA, pays for the Personal Assistants (PAs) who serve as my arms and legs. I often tell people that my PAs allow me to be independent, but what does that really mean? Indulge me as I get to the nitty-gritty.

It means my PAs come into my house every morning and start by uncovering me when I am ready to get out of bed, and then sit me up. They move my wheelchair next to the bed then transfer me from the bed to my wheelchair using a slide board. Then they transfer me from my wheelchair to the bedside commode so I can go to the bathroom. When I am finished, they take the bucket to the bathroom where they empty it and clean it.

If you can no longer independently use a toilet, who is going to dump your bucket? Who’s going to wipe your butt if you have to use a bedpan? Who is going to try not to gag when you have diarrhea or when your period comes on heavy and unexpectedly?

When you become disabled, injured or old, your need to relieve your bowels and bladder will not magically disappear. You will still need to pee and poop. When you do go, who will help you?

Are you going to depend on your spouse? That may work if you are married to someone willing to assume the role of caregiver. Maybe you’ll depend on your children, assuming you have them and assuming they live close enough to come help you every time you need to go to the bathroom.

How many times each day do you like to use the toilet? Would that number change if you needed the assistance of another person? On good days, I use the toilet four times. Most days, it is only three. With planning, I can get by with two.

This choice – the choice to determine how many times per day I wish to urinate – is a choice I have because I do not live in an institution. I am not forced to live in a nursing home where someone is tracking the number of times I use the toilet, or how much fluid I drink and void each day. I am not viewed as a patient in need of medical care, but a person with dignity and liberty.

But without Medicaid, the funding source for long-term services and supports for millions of disabled Americans, this choice is gone. To better understand how Medicaid works to make freedom and liberty possible, read this great summary by Rohmteen Mokhtari.

Take away Medicaid and you take away our liberty. Take away Medicaid and thousands of us will face no alternative but to turn to institutional care just to meet our basic needs. I am not the only one predicting this. Read this article from The Guardian to learn how others have been impacted by Medicaid and why they are fearful of the BCRA.

I am fortunate. I have friends and family who have rallied to my side in the past when I have needed short term assistance. I have friends and peers who are willing to protest for our civil rights, who are willing to be lifted out of their wheelchairs and carted off by police. I have a platform that allows me to tell my story.

And as the late disability rights activist Harriet McBryde Johnson wrote, “Storytelling is a survival tool.”

 

 

Feeling Out of Shape?

I was scrolling through my Twitter feed last night looking for inspiration for a blog post when a Washington Post headline caught my eye.

Feeling out of shape and fat? Here’s how to fix that: Start walking.

I retweeted the article, which you can read for yourself here. Without reading it, I wrote, “Once again, I’m doomed. #wheelchairproblems”

Feeling a bit guilty for retweeting an article I hadn’t actually read (something I never do) I went back and clicked on the article. Maybe they discussed alternatives for people, like me, who are not able to walk. Perhaps they were inclusive of people of all abilities and I was being hasty in yelling at my monitor about the ableist headline.

I read the article, which describes EverWalk as, “an initiative that aims to get Americans on their feet. Anybody can commit to walking at least three times a week by signing a pledge on EverWalk’s website (at everwalk.com).”

There WAS one mention of disability towards the end of the article. “If you’re in a chair, pledge to do the roll.”  That may work for someone who uses a manual wheelchair, but what about someone like me who is no longer able to self-propel a manual chair?

Getting frustrated, I searched the EverWalk website and found lots of photos and encouraging images of people walking. I did not see anyone with an obvious disability. I did not see anyone who looks like me.

So, I did what I have never done. I took to Twitter. I responded to the article tweet, and directly tweeted EverWalk with my main question. What about those of us who care about health and fitness but can’t “just walk?” As of the time I finished writing this Sunday night, I have not heard any response and I really don’t expect to.

I applaud Diana Nyad and Bonnie Stoll, the founders of EverWalk, for wanting to do something to help heart disease and diabetes, diseases which can be caused by our nation’s sedentary lifestyle. However, I wish their program were more inclusive of people of all abilities. If the premise is for people to “move more,” then why not include disabled people moving in the images on the website?

When the United States Surgeon General launched the “Step It Up!” campaign, the report and accompanying images included people with visible disabilities. This important inclusion meant I was less inclined to react with disdain and sarcasm when I viewed the promotional video which had images of people who looked like me.

Sure, physical activity is important for health. Most people are able to walk, and encouraging walking makes sense because it is an activity which does not require expensive equipment.

But not all of us can walk.

We care about our health and fitness too. Yet, when you leave us out of your campaigns, you send us the message that we can’t be successful in our fitness goals. You tell us we don’t matter.

That message really gets me out of shape.

Visibility

When I was president of my college Alumni Association, one of the best perks of the “job” was having the honor of leading the procession during commencement. For four years I, along with the current president of the Student Association, was the first person to walk through the entryway when the band started “Pomp and Circumstance.”

Photo of two women wearing academic cap and gown.
Starting the procession of graduates at my Alma Mater made me visible – and gave me the chance to reconnect with former professors and mentors.

I gladly performed this task for several reasons. First, I enjoyed celebrating the achievements of the graduating students. Their energy and enthusiasm was contagious. Being a part of commencement made me feel better about our collective future. Second, being involved in commencement helped me build a stronger network of professional connections because I had the opportunity to further my relationships with former professors, colleagues and acquaintances.

However, the main reason I took part in commencement is because I loved the fact that all of guests, family and friends saw their graduates being led by a chick in a chair. It is estimated that over 5,000 people attended the ceremony each year. They saw me first.

Of course, they saw the faculty. They craned their necks and waved with glee when their graduate entered the arena. They quickly forgot about the woman in the wheelchair who was seated in the front row on the stage.

But for the first few minutes of the ceremony they saw me and my wheelchair. They watched me smiling as I approached the ramp on the side of the stage and then took my place to the left of the podium. They may not remember me now. But for a few moments, I was visible.

Since the United States House of Representatives voted to approve the American Health Care Act (AHCA) of 2017 (H.R. 1628) a few weeks ago, many people with disabilities have used the hashtags #IAmAPreExistingCondition or #IHaveAPreExistingCondition on social media to help gain visibility. Personally, I like the first hashtag because I agree that my disability is part of my identity. I would not be who I am without my disability.

Say what you want about hashtags, but in this age of social media they are a vital tool in gaining visibility. Salon.comAl Jezeera, and CBS News are just a few of the media outlets to feature stories about the #IAmAPreExistingCondition hashtag trending on Twitter. Even if you don’t agree with the rationale behind the hashtag, or if you think we’re all overreacting to political events – you see us!

People often ask me how to learn about disability. The best way to learn is to read and listen to stories from actual disabled people. I agreed to act as a volunteer co-moderator of the Disability Visibility Project (DVP) Facebook page because I believe we need to share and promote disability stories which are told by disabled people. Alice Wong, founder of the DVP, does a fantastic job of curating stories which constantly challenge my way of thinking. If you aren’t following the page, you should give it a look. I’m not just saying that because I am there frequently throughout the day.

It is important to me that I support other disabled voices, especially disabled people of color. Last year, Vilissa Thompson started using the hashtag #DisabilityTooWhiteAs Vilissa explained on her blog, “The hashtag forced me, and others, to discuss the elephant in the room – the racism, invisibility, erasure, lack of representation, and othering of disabled people of color.” As an advocate, I do not further our cause if I am not recognizing other people’s experience with disability and marginalization is different than mine. If I do not help change the representation of disability, I am not being inclusive in my efforts. People have called me out when I have not been inclusive, and I am grateful for their attention.

Some days, it is easy to feel invisible. We think our struggles or successes are not witnessed by others. We do our best, wondering if anyone really notices.

Yet every time I question if what I’m doing makes a difference, someone approaches me and tells me they have read a blog post or seen me at a protest or event. These little acts help increase visibility for not just me, but other disabled people as well. Hopefully these moments of visibility multiply when stories are shared, and help further reduce disability stigma and shame.

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.