How I Spent My Summer Vacation

There was a chill in the air this morning in upstate New York. Summer is drawing to a close and for many, this long holiday weekend signals the coming of Fall.

Local schools will begin classes next week. When I was a student, early September was the time to reconnect with friends and reminisce about summer vacations. Since many of you feel like friends to me, let me share the story of my summer vacation.

A few months ago the President of Ms. Wheelchair America (MWA), my friend Shelly Loose, called and asked me if I was ready to be a judge at the national pageant. I agreed without even checking the dates and told my best friend Steph, who has been to ten national pageants with me, to put in a vacation request. We were heading back to MWA.

For twelve summers (2001 – 2012) I spent my summer vacation at the MWA Pageant. Regular readers know I have been involved with MWA in various roles since my year as Ms. Wheelchair New York (MWNY) 2001. After representing my state at the national MWA Pageant, I volunteered as state coordinator of the MWNY program for twelve years. I served on the MWA Board of Directors as Secretary, Vice President and Executive Director. We hosted the MWA Pageant here in New York in 2005. I have often joked that the only roles I haven’t held for MWA are President and Judge. I can’t make that joke anymore after this summer.

It was difficult not to say anything in the months and weeks leading up to the pageant. Close friends and family knew where I was going but I didn’t say anything on social media. The excitement grew as the summer approached.

Finally, the week was here! Steph and I loaded up my van on a mid-August Tuesday and hit the highway. Armed with snacks, beverages, a fully charged iPod, a bedside commode, and a scavenger hunt list, we were ready for the open road. The drive to Erie, Pennsylvania, site of this year’s national pageant, was a raucous trip thanks to funny road signs, Chex mix, my “Steph Tunes” playlist, and an unexpected casino stop and win.

The pageant itself was uplifting and positive, as MWA always is. Our judging panel clicked right away and I enjoyed the experience of judging more than I thought I would. Every woman who came before us was passionate about a cause, and their enthusiasm was contagious and inspiring.

More than judging, I enjoyed being an observer during the pageant. When I was a titleholder, the MWA Pageant was my first exposure to being in a room surrounded by thirty other accomplished women who all happened to use wheelchairs. I left that week with women I could call “sisters,” my first peer support network of other wheelchair users who weren’t men. Watching this year’s titleholders develop their own sisterhood reminded me why I loved being a part of the national program.

It is humbling to know that I have played a small part in making it possible for other women to experience a program that helped me grow and develop as a leader. Many of the skills I use in my work and volunteer life were honed through my years with MWA. Being asked to help select the woman who will be the public face of the organization was an honor and responsibility I took seriously (even though we had TONS of fun and laughs during the week).

Each year, there are one or two women who really open up and come out of their shells during MWA. Steph and I have seen this many times during our years volunteering. Sometimes we can pick them out early in the week and sometimes we don’t notice it until we reflect back on the week during out travels home. The transformation is always exciting to watch. These women leave the week inspired to accomplish more than they thought they could, ready to challenge limitations and change their communities.

I always leave MWA a changed person too. This year I left with a heart full of joy and hope. Those two feelings have been in short supply in my life as I continue to slog through the process of acquiring a new accessible van and regaining independence. The pageant week gave me a much-needed boost of optimism and encouraged me to keep advocating through a bureaucratic process that is slower than molasses in January.

To the women of this year’s pageant – thank you for sharing your stories and convictions with us. You encouraged me more than you may realize. My will to keep fighting was replenished.

Only one of you went home with the title, (Sheri Melander-Smith from Minnesota is the new MWA 2018), but you are all winners. You will continue to make improvements in your neighborhoods, towns and states. Congratulations on your accomplishments so far. I look forward to seeing what great things you will do next!

Two women seated in wheelchairs. One is wearing a pink dress and shawl. The other is wearing a purple dress, a sash and crown and holds a bouquet of flowers. Both are smiling.
Congratulations to the new Ms. Wheelchair America!

Now it’s your turn! What did YOU do on your summer vacation?

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My Go-To Tunes: Old School Country

I have always been a person who associates memories with music. I can’t always remember what I was wearing for a specific event, but I can tell you what memories are attached to songs.

Growing up, our house was always full of music. The stereo was playing, or one of my sisters was practicing her musical instruments. I learned to sing songs which may or may not have been appropriate at a young age.

One of the first songs I remember singing is “Rhinestone Cowboy” by Glen Campbell. I used to have an orange plastic rocking horse with a blue mane. I named him Filbert. I would ride Filbert in my parents’ living room, wearing my cowboy hat, and sing “Rhinestone Cowboy” at the top of my lungs. I still know all the words. I don’t know whether to be proud of that.

Today I heard the news that Glen Campbell passed away. In honor of his life and legacy, I give you my Old School Country memory. Thank you for the music Glen.

 

Laughter as Therapy

Last week, my friend Shameka sent me a text inviting me to join her for a night out. The comedian Josh Blue was coming to town – did I want to go?

Of course, I said yes. I love Josh. His comedy is super funny and smart. He uses his disability (he has cerebral palsy) in his stand up routines, but not in an inspiration porn way. If you’ve never seen him perform, here’s a clip from his special “Sticky Fingers.”

After the week I had, I was looking forward to a night out with good friends. Kelley, Shameka, Katie and I arrived at the comedy club early because we wanted to be able to get a table which would accommodate 3 wheelchairs and still give us a good view. I expected to see more disabled peers in the audience because so many people I know like Josh, but we were the only three visibly disabled people in the room as far as I could tell.

Josh didn’t disappoint. He was hysterical! We laughed, and laughed, and laughed. At one point, I made the mistake of taking a drink when I thought he was pausing. I was not ready for the joke and almost spat my mouthful at Kellie. I don’t think she noticed.

It was very interesting to watch the mainly nondisabled audience respond to his jokes about disability. As a person who often jokes about the stupid crap nondisabled people say to me, Josh’s jokes were spot on. I don’t claim to have the same timing or talents, but whenever I make comments like he did I never notice the tension in my nondisabled listeners as was present early in the show last night.

Here’s the thing – laughter is an important tool in helping us find common ground with those who are not exactly like us! Josh said it himself in his show last night when he quipped, “Doesn’t it feel good to laugh?”

Yes! It felt great to laugh last night. As I’ve written about in several posts, the past eighteen months have been some of the most challenging months of my life. I have not had much laughter. I miss it. I dislike being angry, bitter and depressed. I have tried to embrace gratitude, and strive to keep public complaints to a minimum. But, sometimes things just suck.

Last night, surrounded by friends who “get it,” watching a comedian who “gets it,” I felt more like me than I’ve felt in months. This morning I woke up still laughing.

Thank you Shameka, Kelley and Katie for a wonderful night of friendship and fun. And thank you Josh for the work you do to help the nondisabled laugh at disability the way we’ve been laughing at it for years.

If you’re reading this in the Capital District of NY, Josh is performing again tonight (Saturday, July 29). His website lists his tour dates for other cities. You should go see him if you can. Maybe you’ll get to pose for your own photo after the show!

Photo of two women using wheelchairs and a man kneeling between them. The woman on the left is black and wearing glasses and a black shawl. The woman on right is white and is wearing a red shirt and blue skirt. The man has a beard and is wearing a black t-shirt  with the word "DELETE" in white letters. All three are laughing.

The words 'Disability Rights are Civil Rights" appear in red, white and blue lettering on a black background.

What the ADA Means to Me

When I was a participant in the 2002 Ms. Wheelchair America Pageant, I was selected as one of the five finalists. As a finalist, I had to answer two extemporaneous questions on stage during the crowning ceremony for the final judging session – a serious question and a light-hearted question. Like most of my peers, I chose to answer the serious question first.

In one single sentence, explain what the American with Disabilities Act (ADA) means to you.

I don’t remember my exact answer. I do remember thinking, “One sentence?! Do they know me?! How am I supposed to answer this in one sentence?!” I could hear my sister Sandy laughing in the audience, and knew she was probably thinking the same thing.

I said something about the ADA being crucial civil rights legislation which gives protection and access to millions of Americans with disabilities. I kept it to one single sentence as requested, at least I think I did.

Today is the 27th anniversary of the signing of the ADA. As I write a draft of this post while riding the paratransit bus to work, I am thinking of the many ways this civil rights law has changed my life and the lives of those around me.

This bus, every public bus that is accessible – all thanks to the ADA and the ADAPT activists who literally put their bodies on the street to force change.

I am going to work today, along with my good friend Bill who happens to be on the same bus this morning. Bill acquired his disability just a few years ago, but thanks to the ADA has been able to remain employed with reasonable accommodations from his employer.

I got out of bed this morning, went to the bathroom, took a shower, got dressed and styled my hair with the help of the Personal Assistant who came to work for me today. My personal care needs can be met in the community rather than an institution because of the ADA (and because I live in a state like New York which offers a Medicaid Buy-In Program for Working People with Disabilities.)

Think the ADA only helps those with disabilities? There are many examples of how ADA regulations have helped more than the disabled population, but here is one that is prevalent. Have you ever pushed a baby stroller down the street and used the curb cut to gain access to the crosswalk? What legislation do you think required those curb cuts? On behalf of all disabled people who fought for access, you’re welcome.

The ADA is about more than just physical access though. For me, the ADA creates a sense of entitlement because it tells me I am worthy of equality. Because of the ADA, it is illegal to discriminate against me and other disabled people. I have expectations of access now that I did not have twenty five years ago. When I travel in the United States, I expect to find curb cuts, accessible toilets, wider doors in hotel rooms, accessible public transportation, and accessible parking.

Does that mean I always find these things? Of course not. But thanks to the ADA, I have the ability to pursue legal action if I feel I am being discriminated against because of my disability.

Equality – that’s what the ADA is all about to me. It is not a guarantee I will succeed, but it is an important guarantee that at least I will be afforded the same opportunity for success as my nondisabled peers.

Of course that is not the way it really works. For many reasons, disabled people still face significant barriers to education, employment, housing and transportation. And of course, like the rest of the United States, we are waiting to see what our legislators will do to healthcare and Medicaid. For many, today is not a day of celebration, but a day of anxiety and fear.

That may sound extreme for those of you who do not rely on Medicaid for your daily needs. I have had friends tell me, “Oh, don’t worry. They won’t take away your personal care.”

Here’s the thing – we don’t know what will happen. And it is far too easy for someone who is able to get out of bed, pee, poop, shower, eat and live without the assistance of another person to dismiss our concerns.

My needs are not “special.” They are the same basic needs every human has. I have the right to expect that I can meet my needs in my community, just like everyone else. The ADA guarantees me that right, and when you need that level of assistance (if you live long enough, you will!) hopefully you will have that right too.

Freedom. Life. Liberty. The pursuit of my career, hobbies and other things that bring me happiness.

That’s what the ADA means to me.

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!