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.

Out of the Mouths of Babes

Friday night was special. I spent the evening with family celebrating my great niece’s seventh birthday. Seven is a fun age, and her party was packed with things a seven year old girl would enjoy – pizza, new clothes for her doll, and a three layer cake covered with pink frosting and chocolate chips.

One of the reasons I enjoy family events is because of the laughter and love we share whenever we are together. Emily, the birthday girl, and her younger brother Evan who is four years old, kept us smiling all night. But it was an exchange that happened early in the party that continues to play in my head.

I was sitting with my sister Sandy when Evan approached us. Like most children, Evan is intrigued by my wheelchair. When he was younger, he was content to simply ride on my lap. Now he is determined to figure out how the controls regulate the various aspects of my chair, such as speed and seat elevation. Standing next to my chair, he displayed remarkable restraint keeping his hands at his side rather than reaching for my joystick. Suddenly, he turned his quizzical gaze to Sandy and this delightful interchange took place.

Evan: Aunt Sandy, where’s your wheelchair?

Sandy: I don’t have one.

Evan: Why not?

Sandy: Because I don’t need one yet. Maybe someday I’ll have one.

Evan: (looking delighted and excited, and clapping his hands) Then you’ll be twins!

The three of us laughed as Sandy picked up Evan for a hug. The party continued, with pizza, presents and cake. But Evan’s comments stuck with me and caused me to reflect as I boarded the bus to go home.

At four years of age, Evan already knows that a wheelchair is a cool piece of equipment. He does not view me with pity. He does not perceive a wheelchair or a disability as being a Bad Thing, with a capital b and capital t as said by the late, great Stella Young. Of course, he doesn’t understand all the intricacies of life with a disability because he is just four years old. But he understands critical information other nondisabled adults seem slow to grasp, such as:

  1. I am my own person.
  2. My wheelchair is not the worst thing in the world, or a reason to shy away from me.
  3. I do not have a poor quality of life.
  4. I am capable and competent.

Evan is not unique in his abilities. All of my nieces and nephews, and now their children, have been exposed to my wheelchair and my disability their entire lives. They have all developed a level of disability cultural competency through their interactions with me, a disabled family member. This has created a level of comfort with disability at a young age in many of them which their peers may not have developed.

When I am with my young family members, I don’t hear negative comments about disability. I don’t hear pity. I don’t hear insensitve or ableist comments like the ones I hear from strangers on a regular basis, such as:

You manage that thing pretty well!

Slow down – you’ll get a speeding ticket!

You got snow tires for that thing?

You’re so pretty for someone who uses a wheelchair.

Oh, you work?!

And my personal ‘favorite’…

I don’t know how you manage. If I had to use a wheelchair, I’d kill myself.

My young family members who have been exposed to my reality as a disabled woman say different things. They say things like:

That man has a red chair like Aunt Denise’s!

Maybe you could drive us to skating when you get your new van Aunt Denise.

Will you read to me Aunt Denise?

We put the ramp down for you Aunt Denise!

And my personal favorite…

I love you, Aunt Denise.

If my young nieces and nephews can understand disability is not the worst thing, why can’t more adults figure it out?

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.

Going Up

Last week, my wheelchair died. I had just transferred from my chair into bed on Tuesday night, and decided to start moving it out of the way while waiting for my Personal Assistant (PA) to put the transfer board down. Only, when I pushed the joystick nothing happened.

I’m not a stranger to this. Sometimes, I don’t wait long enough for the drive motors to engage before trying to drive. I’m impatient. I like to go when I want to go. But, I know there is a start up sequence that has to run and if you try to operate the chair before it is ready, it won’t go. You’ll push on the joystick and nothing will happen.

So, last Tuesday night I did what I always do. I counted to five and tried again. Still nothing. I turned the chair off, then turned it back on and waited for another five seconds.

Zero movement.

My chair has a powered seat, so I tried those controls next. The seat base elevates and moves forward and backward, giving me more clear floor space in front of my chair during transfers. My seat elevator also makes it possible for me to reach higher objects, rise to a standing height during speaking engagements, and helps me get my own drink off the bar when I am out with friends instead of relying on others.

Last Tuesday when I tested the seat controls, it moved forward and backwards but did not change height. This was a problem because it was elevated. I elevate it most of the time I transfer out of my chair because, well, gravity still works. It’s easier to go from higher to lower than to transfer uphill.

The final piece of the puzzle came to light when I looked at the screen on my joystick. Highlighted in yellow was the message “drive fault.” This told me it was probably either the joystick, the controller (the computer brain of the chair) or the drive motor. None of them were good possibilities, but without a diagnostic tool I couldn’t do anything further. I had my PA disengage the drive motors, push my good chair out of my bedroom and get my old clunker chair out of my office.

Thank goodness I listened to Bob, my wheelchair repair guru, when he told me to put new batteries in my old clunker. Sure the old clunker isn’t comfortable to sit in for long periods of time, and I wasn’t sure how I would manage in it with formerly fractured femur, but at least the chair was made to my measurements. Five years ago, this was my daily chair. Even if it had outlived it’s daily use, it would be better than a loaner which didn’t fit me.

I used my clunker last Wednesday while Bob ran diagnostics on my chair. Of course, when my PA brought the chair to the shop, it worked perfectly. Try as he might, Bob couldn’t get the chair to fail. From how I described the error code, Bob was fairly certain it was the seat elevator, not the joystick, motors or controller. He played with some loose wires, adjusted the seat elevator actuator (a known problem on prior repairs to my chair) and arranged for delivery of my chair back to me later that day.

Fast forward to this morning, a week later. I drove my chair under the bathroom sink after breakfast, ready to brush my teeth. I activated the seat controls and moved my joystick to elevate my chair. All normal activities, except the chair didn’t move. Ugh.

Opponents of funding for complex medical technology always say adaptations like seat elevators are luxury items and not really necessary for people like me. Luxury? Well, here is a list of things I have not been able to independently perform in the 90 minutes since noticing my broken seat elevator:

  • I have not been able to brush my teeth. The bathroom and kitchen sinks are too high for me to access without my seat elevator. I could grab a cup to use as a spit cup but…
  • I can’t reach the cups in the cabinets because I can’t elevate my wheelchair. No access to cups means nothing to use to help me brush my teeth or take a drink.
  • I can’t wash my face  – another task requiring the ability to reach the sink.
  • I can’t get my sweater off the hook behind my bedroom door. I’ve tried using my reacher. It doesn’t give me enough height.

I’ve already called Bob. He’s going to look at my chair as soon as my PA gets it to him. Thank goodness for Bob. Every wheelchair user needs a Bob, and those of us who have a Bob know how fortunate we are.

 

30 Days of Thanks Day 21 – Guest Post by John McCosh

I met my guest blogger, John McCosh, and his wife Kristen at the Ms. Wheelchair American pageant almost ten years ago. Kristen was representing Massachusetts in the pageant and John was one of the amazing “Mr. Wheelchairs” as I called them that year. Our friendship developed over the next year during Kristen’s reign as the national titleholder. These days social media helps keep us connected. I am grateful John accepted my invitation to share a post for this year’s 30 Days of Thanks. After you read today’s post, you can follow John on Twitter: @johnmccosh.

The Perfect Wheelchair Trap

From our stateroom balcony, I watched the trail of crushed water our cruise ship left behind in a white boil. I was transported by the visual of the mesmerizing evidence of man made energy posted against nature’s historic depths trailed out atop an empty water horizon.

I thought about the liquefaction, the reinvention, the breaking, and the making of the earth; about Vesuvius and the changes the volcano would wreak; about Pompeii and Herculaneum. I thought about dusty Rome thanking the skies for rain.

Crossing the wine dark sea of the Mediterranean, I thought about how my home city, Boston, was more of a European city than I had, until recently, realized.

But I mostly thrummed with the emotion of having fallen into the perfect wheelchair trap.

My wife Kristen and I had spent the day in Marseille. The access coordinator on our cruise ship had said it couldn’t be done–there was no way for a wheelchair to get around, but, as we often do, we went anyway and made it happen.

We were dropped off by the shuttle bus at the mouth of the Old Port. The last bus back was leaving at 2:15 and all aboard the ship was 3:30. We walked down to the historic port and could see Notre-Dame de la Garde crowning the high elevation border of the city. We knew we wanted to make it there.

I wrestled up some old high school French lessons and found a hop on, hop off bus tour. We bought tickets and toured the city, passing the rock in the harbor that was the inspiration for the Count of Monte Cristo. We made it to Notre-Dame. I pushed and pulled the wheelchair along a rocky slope beside a long set of inaccessible stairs as we made our way to the foot of the church and looked out over the sweeping expanse of France’s second largest city and its largest Mediterranean port.

We were having a great day.

On schedule, we finished the tour and did some shopping back at the Old Port and made our way through the ancient part of the city. What we didn’t realize was that the Old Town made a steady climb, over a hundred feet above the sea.

I knew we were on track to get to our bus in plenty of time, but when we rounded the last corner, by the Eglise Saint-Laurent church we realized there was no way down. The ancient stone wall was a modern wheelchair barrier. There were long, winding sets of steps but no ramp or elevator.

But we still had time. We crossed the footbridge to the Museum of European and Mediterranean Civilisations, traveling right over our bus stop.

We had no idea the trap had been sprung. The French spoke enough English to understand we wanted to come in, but not enough to tell us you can’t exit to the street in a wheelchair.

Time was draining from the clock as we made our way through the building and the grounds. It was twenty minutes later when we realized we had to turn back!

We passed over the bridge again, back to the Eglise Sait-Laurent side—the side with out bus parked below. We considered backtracking through Old Town, but that was going to take too long. We zoomed down the road parallel with the bus route.

Kristen’s wheelchair was at full speed, me jogging beside. A quarter mile down the road we reached an elevator next to a huge set of stairs leading down to the lower elevation. It was broken.

A mild panic set in. We set off again, away from the bus, but parallel to the road to which we needed to descend. We checked a church for an access route as well as a set of stores, all the while making progress in the wrong direction, away from the bus. We finally made it to a thoroughfare, but there was still no path down in sight. We were stuck in a high place.

We were now more than a kilometer away from the bus. Even if we made it to the road we’d have to backtrack a considerable distance, and who knows what other barriers there might be.

We flagged down a woman who had just parked. We asked about transportation options, and she said it was difficult to get a taxi here, but she called anyway, our interpreter. The taxi said they were too far away but called another service.

We were forty-five minutes from all aboard. Our passports were on the ship along with most of our money and credit cards as we’d heard to be on the lookout for pickpockets and didn’t want to chance carrying them. Also, our two traveling companions were on-board with no cell service activated here. Our next stop was Barcelona, and I had no idea how we’d catch the ship if we missed it.

I spotted a taxi, my wife ducked out of site so the wheelchair wouldn’t scare him off. He stopped, and he spoke very little English but I was pretty sure he knew our ship. We broke the wheelchair down, taking out batteries, and collapsing the new wheelchair for the first time. We put it in the trunk and drove off.

We made the port, drove past the guards, and were virtually alone on the pier beside the ship with less that thirty minutes to spare.

On our balcony of the Norwegian Epic, I caught a reflection of my wife brushing out her long, blonde hair. We were on our way to dinner, and I knew I’d be thanking her for the adventure over dinner as we told our friends what had happened. And later, when we would walk the deck of that modern ship in an ancient world I’d think how much fun our life has been. I knew we’d talk about the trap we’d escaped and how thankful we both were to be on course together.

But for now I watched her traverse the low ramp out onto the deck, and I poured dark wine into crystal and proposed a toast to the sea.

A man in a baseball hat sits next to a blond woman wearing a black hat. They are in front of a fountain in Rome.
John and Kristen on their recent European vacation.

30 Days of Thanks Day 20 – My Personal Assistants

I regularly thank the Personal Assistants (PAs) I employ both in person and publicly. Without their efforts and dedication, I would not be able to live independently in the community. They are vital to my ability to function as the professional woman I try to be.

This year has been a rocky year for me when it comes to my PA team. I have faced employee theft, injuries, and illness in my staff. As all managers know, you are only as good as your team and it has been difficult for me to retain a quality team in 2016.

I employ fourteen women as PAs, with six of them filling the majority of my weekly home care shifts and the rest serving as per diem or back up staff. Yesterday I described Consumer Directed Personal Assistance and my role as employer in my self-directed home care program. Rather than a nursing agency scheduling and sending staff to my house, I am responsible for recruiting, training, scheduling and managing my staff. While this does offer more freedom and control, it also comes with great responsibility.

Please don’t misunderstand me – the women I employ are wonderful. They are kind, considerate, compassionate and respectful. Most of the fourteen women on my payroll have been working for me for more than three years. I am grateful to have them and recognize how limited my life would be without their service.

However, gaps in staff make it difficult to function. If my staff are unavailable and I cannot find a fill-in, I am not able to honor commitments to work, volunteer groups, or friends. I miss appointments or meetings if my PA calls out when she is supposed to drive me somewhere. When I can’t find paid staff to assist me, I must ask friends and family to help fulfill my basic needs, and unless you have had to call someone to help you pee or poop, you may not be able to understand how I truly detest having to make that call. Friends and family are kind and helpful, and do not make me feel guilty about having to call. I do that just fine on my own. That’s my issue, not theirs. Fodder for another post.

I have hired, and fired, more PAs since February than I have in the prior two years. I require more assistance now than before my femur fracture, and my established staff did not have the availability to take on my new shifts. I have used multiple online sources to advertise my employment opportunity, and have had good response. But a good response does not always yield good candidates. Since February, I have screened 48 applicants, conducted 23 phone interviews, and 8 in-person interviews. I have hired 4 people, and fired 3.

I am still looking for a PA to work some weekday and weekend shifts, if anyone knows someone looking for part time work in the Albany, NY area! Although the job does require some physical labor (the ideal candidate will be able to lift 50 pounds and will be comfortable standing, bending, squatting and reaching), it is a casual work environment and my staff routinely get to be taste testers for new cookie recipes!

All kidding aside, the job of a PA is very demanding and can be challenging. I am human, and sometimes I have a bad day or a broken leg, and I just don’t want to have to deal with people because I am in pain and frustrated – even though I need a person to be in my space so I can go to the bathroom, get undressed and go to bed. My PAs are also human, and sometimes they have bad days, or sick children, or hospitalized parents, or dying pets. When these things happen (and they have all happened this year), it can be difficult for both me and my PAs to tolerate each other.

But my PAs keep coming to work. They are pleasant and upbeat, even when I complain non-stop about pain. They help me with my physical therapy and stretching, even when I swear and grimace every time my knee moves from extension to flexion. They find creative ways to style my hair to help hide the shorter patch which is still growing back after the nurses cut it out when they removed the central line from my neck. They learn new ways of performing tasks as my body changes and I lose muscle strength and range of motion. They adjust to new routines as I settle into my new home. They are patient when I am delayed returning home because the bus was late to pick me up.

The women I hire are my arms and legs. They make it possible for me to remain active and engaged with my friends, family and colleagues. Without Michelle, Sally B, Stephanie C, Caroline, Ronda, Amie, Tina, Therese, Stephanie M, Sally W, Lisa, Sarah, Esther, and Margaret I would not be able to live an empowered life. I am grateful for all the tasks they perform day in and day out, with diligence and dignity.