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.”

 

 

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Being Number Six

All my life, I have been referred to as “number six” by my father. Dad used numbers to describe me and my five older sisters whenever he spoke about us to others. Sometimes we would be at a party and he would call us over to introduce us to a friend.

Have you met Caroline? She’s my number five daughter. Caroline – come over here!

When my parents were first taking me to medical appointments to determine the cause of my disability, Dad always pulled out his wallet whenever the nurse or social worker expressed astonishment upon learning I was the youngest of six girls. Beaming with pride he would flip through the photographs in the plastic sleeves, naming us and offering a tidbit of information he felt important to share.

That’s Susan, number one. She’s pregnant with our first grandchild. And Mary Jane, number two. She’s studying to be a violin teacher.

Photo of six white women varying in age and their elderly parents. One of the women, the author, is seated in a wheelchair.

Dad always said he didn’t care what jobs we did when we grew up, as long as we we did them to the best of our abilities and helped others along the way. When he bragged about us to my orthopedic surgeon, he was as proud of Donna as he was of Sandy.

Smart girls, both of them. All of my girls went to college, and hopefully Denise will too. 

Dad had his favorite stories about each of us. When we gathered as a group for a family dinner or celebration, he would reminisce and share his memories with whoever happened to be around the table. It didn’t matter if you had heard the story many times before, you still laughed when he talked about the time he sent the “five girls” (how he always spoke about my sisters before the time I arrived) outside with a gallon of white paint so he could watch a football game in peace and quiet while they painted the fence. My mother arrived home later that afternoon to find my sisters had used an entire can of paint on just five feet of fence, but also on the grass, rocks, their hair and clothes.

You should have seen her face! She was fit to be tied. You girls were covered in paint.

I was an adult before I realized how much Dad had worried about me. As a child, I never knew he was anxious about whether I would become ill, or if my disability would shorten my life. Then last year at our annual DiNoto cookie bake, he took my hand as I was telling him about work and gave it a squeeze.

Well Niecie, I guess I don’t have to worry about you dying young anymore.

I was stunned, but tried to laughingly reassure him I was doing just fine and was now too old to be considered young if I were to die. While I squeezed his hand in return, I asked if he was still truly worried about me that much.

When you were little, they couldn’t tell us much about what to expect for you. I’m your father. I worry about not just you, but all my girls, all the time. It’s what dads do.

That was the last time I saw my father in person, the last time I held his hand, the last time he pulled me in for a hug and kiss.

Three weeks later, my phone rang as I was returning home from my early morning swim on a cold December morning. When the caller ID on my phone read “Mom and Dad” but Caroline’s voice came through the line, I knew something was wrong. Caroline’s voice cracked as she told me Dad had died. I don’t remember much of the rest of the conversation, probably because some of the other sisters were trying to call me and my phone kept beeping with incoming calls.

The day passed in a blur as I made plans to leave for a week in my hometown. I washed and packed clothes, wrapped Christmas presents and prepared cookie trays while fielding calls and texts from friends and family. Eventually I crashed in bed, exhausted from crying on and off all day. I fell asleep reviewing my mental list of what was left to pack in the morning.

I dreamed about Dad that night. He was getting ready for a fishing trip. I was a child, standing next to the pile of his gear, watching as he packed the back of his truck. When he was done, he slammed the tailgate. Turning to me, he smiled and tucked my hair behind my ear.

Don’t worry Niecie. I’ll bring back enough for all of us.

 

 

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.