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 Walk. The 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.

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!

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!

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.

Sitting Will Kill You

A couple of weeks ago on a Friday morning, while scrolling through Facebook, a colorful image of empty chairs popped up in my feed along with the headline, “The Futility of the Workout-Sit Cycle.” I hesitated, then fell victim to the click bait and opened the link. Here’s a brief excerpt from the conversation in my head:

Why are you reading this? It’s just going to make you angry. I bet you the author concludes sitting will kill you. What are those of us who can’t help but sit supposed to do? Am I the only one who reads this and thinks ‘I’m screwed?!’ 

It’s the same conversation I have with myself whenever I read an article about some new study related to physical activity and health. Some group, in this case it’s the American Heart Association, issues a report such as this one with the catchy title of “Sedentary Behavior and Cardiovascular Morbidity and Mortality.” Then someone writes a summary, which appears in a magazine like the article I saw in The Atlantic. I read the article to see if there is any mention, just one tiny mention, of disability. Usually, there is not.

After reading the article in The Atlantic, I shared it on the Disability Visibility Project (DVP) Facebook page (full disclosure – I am a co-moderator of the page). Founded by the amazing Alice Wong, the DVP is an online community dedicated to recording, amplifying and sharing disability stories and culture. The DVP Facebook page is public, and the articles often lead to some interesting discussions about disability culture and identity, ableism, and media representation of disability. When I shared the article, I wrote:

Once again, a major medical organization tells us that sitting can kill you. As someone who has no option to stand, I always wonder if activity and exercise performed while sitting is even considered by these researchers. What are those of us who aren’t able to stand supposed to think when we see these articles? Yes, I know a sedentary life is not healthy. If that is the message, why not just say that and be inclusive of those of us unable to stand?

As the day progressed, and the comments continued, I realized I was not the only one to have these questions. Knowing I might write about this article, I asked if I could share comments. Some of the thoughts and comments are included here. While I have edited them down for brevity, I have kept the original language each person used.

Sparrow: “That’s an excellent point and one I confess I hadn’t considered. No one is researching active sitters and that’s a huge omission….Thank you for helping me re-think the whole “sitting is bad for you” assumption. I’m going to be more careful with my language around that now. I write ad copy part-time and had to write about a standing desk last week and would have written differently if I’d read your comments first.”

Luticha: “I have spoken to researchers about this. and basically it boils down to disabled bodies behaving differently than nondisabled bodies. So while they know that disabled folks have higher rates of obesity and heart issues the issues don’t stem from disability per se but lack of access to recreational sports or accessible gyms. And for those completely immobilized there isn’t much outside of controlling diet.”

Linda: “I dislocate things when I exercise (or even move sometimes), any part of my body… Even walking more than a few feet makes me dizzy and fall. The only way I can lose weight is to starve myself – even back when I could and did exercise for hours each week, it was like this. I ended up with anorexia, twice. Not planning on risking that again. Anything other than life saving surgery is way too risky, so lapband surgery etc is also out. I move my muscles when I can to keep the blood flowing and the nerves fresh, but other than that, what’s a girl with rotten metabolism in the best of circumstances to do? I like that this research is done, but I hate reading it…”

Shayna: “It’s not written well to consider people who use wheelchairs or have disabilities/illnesses/injuries that mean being upright for long, or at all, is not an option. But this part of the article talks about raising your metabolism to 1.5 times being completely still (which they describe as sitting or reclining). And that would mean that seated activity would count. So that’s good, would be nice if they had considered this and stated it explicitly though.”

Heather: “Good points shared and yeah, I usually read this kind of stuff with a grain of salt and long stop taking blanket advice like drinking 8, 8 oz glasses of water a day..way too much for this body, bladder response is like hell naw.”

I decided to search the original report from the American Heart Association and read it instead of just reading the summary article. Sure enough, on the second page there it was:

Therefore, we restrict this advisory to adults without ambulatory limitations.

Again the voice inside my head speaks up: Right – because who cares about the health of adults with ambulatory limitations? ‘They’re disabled and their health must be poor anyway, so why should we focus precious research dollars on them? It’s not like they worry about their health anyway, because they have such poor quality of life.’ That’s what you’re really thinking, right?

The report defines sedentary and gives examples of sedentary behaviors. Basically, anyone who does not get moderate-to-vigorous physical activity (MVPA) is sedentary. What is MVPA? According to the article (and the Sedentary Behavior Research Network), “MVPA is defined as activities that expend at least 3.0 metabolic equivalents.” In case you didn’t know (because I had to look it up too), one metabolic equivalent is the energy expended while a body is sitting at rest.

I may be sitting all day, but I am NOT sedentary! I can get an increase in heart rate simply by trying to reach for my phone when my Personal Assistant (PA) has moved it without thinking. I can break a sweat trying to transfer in and out of the driver’s seat in my van. When I go for walks around the neighborhood, my muscles are actively engaged trying to maintain an upright posture in my wheelchair as it rolls over uneven surfaces. Even sitting and reading can get my blood pumping – especially when I read articles which equate sitting with sedentary! But I was talking about the article…

The focus of the article was to explore the research to identify potential public health messages or guidelines to reduce sedentary behaviors. After describing the clear need for more research (do articles ever NOT say there is a need for more research?!), the authors conclude with this simple advisory, “Sit less, move more.”

Sure. I’ll get right on that. As soon as I figure out how to move more once I’m no longer sitting – given that sitting is my only means of mobility and I cannot independently move if I am not in a seated position.

Yes, I understand that what they really mean is “move more,” be more active, don’t sit and stare at the computer screen for hours on end without moving. Well, if that is what they really meant – why couldn’t they just say that? Why do the recommendations always involve an activity I (and millions like me) cannot do?

In 2015, the United States Surgeon General issued Step It Up! The Surgeon General’s Call to Action to Promote Walking and Walkable Communities. The report aims to, “get Americans walking and wheelchair rolling for the physical activity needed to help prevent and reduce their risk of chronic diseases and premature death.” To help involve people of all abilities, the National Center on Health, Physical Activity and Disability (NCHPAD) launched the “How I Walk” campaign. The campaign is described on the NCHPAD website as a “movement to rebrand the word walking by challenging individual and societal perspectives.” In doing so, the campaign aims to focus on inclusive physical activity for everyone, recognizing that each individual has their own means of “walking” or moving.

As someone who “walks” differently from most people, I appreciate this effort. Of course I realize the majority of people “walk” on two feet. I even use the term “taking a walk” to describe what I do when I head out to explore the trails and paths around my town. That doesn’t mean I don’t want people to consider how I “walk” when they are planning their public health interventions. When public health professionals consider all adults, and design systems and interventions which meet the needs of people with disabilities, they will meet the needs of EVERYONE. An inclusive public health infrastructure will benefit everyone, including disabled adults who are three times more likely to develop a chronic disease than nondisabled adults.

Now, if you’ll excuse me, I think I’ll go for a walk. I am now living near the Champlain Canal Trail and I feel like exploring before I die from sitting too long.

30 Days of Thanks Day 20 – Helen

A few months before my trip to Tasmania, I discovered a blog called Walking the Derwent. I read the posts with interest, recognizing familiar scenes in the photographs. The blogger, Helen, chronicled her adventures walking the shores of the Derwent River in Tasmania. I started making comments on posts. It didn’t take many weeks before Helen and I were corresponding directly by email.

I told Helen of my trip, asking if she would be interested in doing a “walk” along the river while I was visiting. Thankfully, Helen responded enthusiastically and suggested we travel on an accessible boardwalk from the Glenorchy Art and Sculpture Park (GASP) to the Museum of Old and New Art (MONA).

Helen and Kelly talking on the boardwalk. Notice the sailboat and dingy in the background?

You can read about our lovely day together in this post from March. It was a beautiful day, and I thoroughly enjoyed having the opportunity to meet Helen and spend time with her in person after exchanging emails for a few months. One of my favorite memories from our day together occurred as we were walking along the boardwalk by the river.

I saw a sailboat in the cove, with what looked like a small rowboat or dingy tied behind it. As we continued along the boardwalk, I saw a scooter parked on the river’s edge with a tow hitch behind it. It didn’t take us long to realize the owner of the dingy had towed his craft to the water using his mobility device. I laughed, snapping photo after photo. Helen and my cousin Kelly walked on without me as I continued to express glee over the scene.

 

I have many photos of this. I love what it says about the owner’s spirit of adventure.

Helen remembers a different moment from our walk. At the end of the boardwalk, we continued along a sidewalk which took us out by the road towards MONA. Helen knew the route would lead to the museum, but did not know if it was wheelchair accessible or if there were curbs. Not wanting Helen and Kelly to need to retrace their steps, I sped past them yelling, “I’ll go check it out!” I flew down the path, not realizing how far I had gone until I saw the museum entrance up ahead. Realizing I was on my own, I thought about going back but figured they would just keep walking if I didn’t show up. Sure enough, fifteen minutes later Helen and Kelly came around the curve and met me where I was sitting on the corner.

We had a marvellous day when we walked along the GASP walkway and then you sped away and left us way back – of course you waited patiently at the gates to MONA.  Very funny.  

Now, whenever I read Helen’s blog posts, I hear her voice in my head. I laugh when I picture her reactions to discoveries and when she describes her encounters with the locals on her journey.

Helen is walking the river in stages. I am most impressed with Helen’s determination and dedication to documenting her progress towards her goal. She does not drive and uses public transportation to get to and from most of her walks. She offers practical tips on her blog for others who might be interested in walking in Tasmania or wherever they are located.

Along the way, Helen has encountered some obstacles and set-backs. She shares these difficulties as well as her successes. Her honesty and perseverance are inspiring. As I mentioned in a recent comment on her blog, we never know how far we can go when we just concentrate on the next step. Sometimes when we look up, we surprise ourselves by realizing just how much ground we have covered.

Helen – thank you for agreeing to meet and for serving as a fantastic tour guide to a stranger. Your hospitality made for one of the most marvelous days of my trip to Tasmania. I appreciate you repeating a walk with me so I could play a small part in your journey. I am honored to have been included. I am grateful for the gift of your friendship. I learn so much from your stories and I look forward to reading more!