Guest Post: Mother and Daughter – Same Disability, Different Experiences

When contemplating who to invite to write the first guest post for Words I Wheel By, I didn’t have to search any further than inside the walls of my house. I knew right away that asking my mom, Ellen, to write a post would provide a valuable new voice to my blog. If you’ve read some of my previous posts, you’ll know that my mom and I both have the same disability – Larsen syndrome. Because of this, and for so many other reasons, she is the person who understands me best. Being a disabled parent of a disabled child, my mom has unique perspectives that I’ve always found to be a guiding light as I navigate through my daily life. She taught me the importance of self-advocacy and she has been my editor- and conversationalist-in-chief for all things related to disabilities and my blog. Together, we try to educate people about our disability, equality, and acceptance. And while I didn’t want to edit her words, my mom is far too modest about the role she and my dad play in my life. They are the most amazing parents I could ever ask for. As you’ll read in my mom’s first post, we have so many disability-related experiences in common, and yet our lives have also been quite different. This is a definite sign of how disability rights have changed over the years.

Even though I am 52 years old, I do not think I have ever spent so much time pondering disability issues as I have since Emily, my daughter, started this blog.  The conversations we have had before, during, and after she writes her posts have been illuminating and have further reinforced how her experiences growing up with a visible physical disability have been very different from my own.

A little family history might be useful now.  My parents are unaffected by Larsen syndrome (LS); same for my older brother.  But I have a younger brother who like me has LS.  It was his birth that led the doctors to suspect a genetic disorder.  However, once our anomalies were diagnosed as LS, our family was assured it was a recessive disorder.  This means that both parents must have the defective gene for the condition to be passed on to a child.  Now flash forward to when I became engaged to my wonderful husband Marc:  we once again consulted with the same genetic specialists who told us that the gene for LS is so rare that we would not have an affected child.  But at my twenty-week sonogram with then fetal Emily, the telltale signs of LS were detected and we knew that our future as a family would again be forever affected.  Only then did the doctors realize that the LS affecting my family was really a dominant genetic disorder.

I am not going to lie – I was emotionally devastated when I knew Emily would face the same physical and emotional challenges that my brother and I did as children.  And truth be told, Emily has had to face even more hurdles and challenging surgeries such as cervical spine fusion when she was 17; she spent much of her senior year in high school in a halo used to stabilize her head and neck while it healed from the extremely risky operation.  But incredibly she has matured into a much more positive, confident, and outgoing person than I am.  While it would be wonderful to think her Dad and I can take all the credit for her successes, I think we truly owe a debt of gratitude to all the disability advocates who are responsible for the ADA and all the other programs and services for individuals with disabilities that resulted from passage of this landmark legislation.  Because of things like curb cuts, accessible bathrooms in public places, and accessible public transportation, people with all kinds of disabilities are much more visible in all our daily lives.  When I was growing up, other than my brother, we only regularly saw one other boy with a visible physical disability.

In addition to the benefits of the ADA, the development of the Internet has had a profound effect on how people with all types of disabilities can communicate today. When we were kids, we only knew of one other person with our orthopedic condition and this happened by a stroke of good fortune: I was perusing the TV Guide one day and saw an ad for the TV show ZOOM which was featuring a girl with LS.  We had to write to the TV station that produced Zoom to ask that they contact the girl and her family to see if they would be interested in contacting us.  They were, and a flurry of letters soon went back and forth.  Today, I am friends with this woman on Facebook, as well as being connected with many other people who either have LS or are the parents of an affected child.  The ease in which people with all types of conditions can exchange essential information and provide support via Facebook, Skype, etc. makes having a disabling condition so much less isolating.

While there is certainly still much work to be done, as Emily shares in many of her blog posts, having a disability no longer precludes participation in the usual childhood recreations or adult occupations.  For example, new playgrounds are being designed to include wheelchair access so all children can interact just as all new public construction projects (and many private ones as well) follow the principles of universal design to maximize the population of people who can enter and conduct the business of daily living.  And with the continued efforts of advocates such as my wonderful daughter, the sky is the limit as to what can still be accomplished!

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Chair Fitness Resources to Conquer the Effects of Carvel Cravings

This afternoon, I was feeling motivated to exercise, so I put on loose clothes and went through a couple workout videos. Later in the evening, my mother called my attention to an article in the business section of today’s Newsday entitled “Getting a little physical working at your desk” by Sam Hananel. The article addresses the negative health effects of sitting too much at work and discusses exercise methods that require standing to help prevent these issues. Cited in the article is Dr. James Levine, a Mayo Clinic endocrinologist, who shares a rather frightening message: “There’s a glob of information that sitting is killing us…You’re basically sitting yourself into a coffin.” I know it’s true that being sedentary poses health risks, but I’d like to think my wheelchair isn’t just a one-way ticket to an early grave. Articles on the potential health problems that can be caused by sitting almost always focus on solutions that are suited to people without mobility limitations. Rarely do I see detailed information on fitness resources for people with mobility limitations, so I’d like to share some of my resources and experiences.

But first, I have a confession to make: while I was contemplating the idea of writing a post on chair fitness resources, I was simultaneously polishing off a Carvel Flying Saucer. I know, shame on me. You see, I’m lucky enough (or unlucky enough) to live across the street from Carvel, and I have a sweet tooth that loves to be satisfied. While I try to eat healthy whenever I can, I don’t deny myself occasional indulgences. Unfortunately, as Dr. Levine reminded me, even a couple treats a week can be problematic for me if I’m not careful. Because I use a wheelchair full time, I don’t move around nearly as much as most people, especially when I use my power chair instead of my manual chair. To account for this, I try to exercise in order to offset the amount of time I spend being sedentary. Whenever I mention that I have various exercise routines, both disabled and nondisabled people always express curiosity as to what kind of workouts I can do. Although there are several methods of exercise I am able to do, my go-to form of exercise has always been seated aerobics and strength training.

There are plenty of ways to engage in seated exercise. You can modify a standing workout routine, you can blast music and make up your own moves, or you can use workout videos that are made specifically for use in a seated position. I’ve done all of these methods, and as fun as it is to dance around my room to Ke$ha or Katy Perry, I find seated exercise videos to be the most effective workouts. Having a structured, timed workout led by a fitness instructor in a video helps me stay focused while still enjoying my workouts.

Now, if you’re like nearly everyone else I’ve ever spoken to about my exercise routines, you probably had no idea that seated exercise videos even existed. People of all abilities ask me where I find them. They can be rather hard to come by, and I’ve compiled a good collection after several years and tons of Google searches. So, I decided to do a round up of my favorite seated workout videos. At the end of this post, I’m going to list both free on-line videos and actual products you can buy if you want to invest in a workout video library.

Keep in mind that just because the exercises are done a certain way in these videos, nothing is set in stone. I have enough use of my arms and legs that I really don’t have trouble keeping up with the movements, but that doesn’t mean there aren’t times when I adapt certain exercises to match my abilities. It’s not a big deal if you don’t mimic each exercise exactly. After all, I don’t know many people, disabled or not, who can kick their legs up in rapid succession while trying to clap their hands below their knees. (Don’t worry; none of these videos are as complicated as that exercise sounds!) The point is to get moving in any way you can. If you’re anything like me, doing these videos will help you feel a little less guilty about those adventures to the ice cream place!

Free Seated Workout Videos (some require inexpensive exercise equipment like resistance bands or dumbbells)

1) Jessica Smith’s videos make you feel like you’re working out with your fun, upbeat, peppy (and frustratingly fit) best friend.
– Chair Workout I + II (seated cardio, strength, fat burning low impact exercise)
– Chair Stretch (quick stretch, seated exercise)

2) SparkPeople’s videos are short and can be done individually, but when combined, they can be a powerful and effective 40 minute workout. Coach Nicole is personable and easy to follow.
– Seated Cardio Workout: Burn Calories Exercising from a Chair
– Seated Abs Workout: Chair Exercises for Your Core
– Seated Upper Body Toning Workout: Chair Strength Training Exercises
– Resistance Band Workout

3) Paul Eugene’s videos can come across as overly enthusiastic, but his loud excitement is secretly motivating for me. You can actually buy full versions of the videos, but he has decent length sample clips.
– Chair Fitness Workouts

Seated Workout Videos I’ve Purchased (require some small exercise equipment, but can mostly be done without any)

4) Jodi Stolove’s Chair Dancing Fitness video series is awesome! There’s a huge variety that includes everything from aerobics to strength training to yoga. My favorite is called “Chair Dancing Around the World.” I know it sounds silly, but I definitely get into it…when no one’s watching! (Check out Amazon.com for lower prices.)
– Chair Dancing Videos

5) Richard Simmons (yes, I went there) has a great video called “Sit Tight.” I don’t blame you if you laugh at his sparkly leotard and roll your eyes a bit, but he does lead you through a good workout. (Check out Amazon.com for a cheaper VHS version.)
– Sit Tight DVD

6) Nancy Tedesco is an R.N. who made a video called “Heart Rate Safe Chair Exercise.” The filming is clearly no-frills, and it seems there wasn’t room in the budget for fancy outfits or flashing lights, but the workout is straightforward and effective.
– Heart Rate Safe ordering information

Do you have any awesome seated workout videos that I missed in this list? Or do you have other ways that you like to adapt exercise routines? I’d love for you to share so I can try some new workouts!

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Disability Breeds Creativity – Celebrating Adaptive Uses of Kitchen Tongs and Ottomans

My family and I often joke that our house should have a sign in front that reads “Home Healthcare Store.” In actuality, our little joke isn’t far from reality; we own enough adaptive equipment that if we put it all in one room, it would look like we have a combination physical therapy office/rehabilitation clinic/medical supply store. We have a little bit of everything, ranging from items like weighted medicine balls and stretchy therapy bands to custom equipment such as walkers, braces, and wheelchairs. And while I could fill an entire blog post with a list of all the things that make my life a bit easier, I’d like to focus on the little things I use each day – both true adaptive tools and repurposed household items – to be as independent as possible. After all, it’s the little things that make the biggest differences.

Three different types of adaptive reaching sticks hanging on white hooks, surrounded by several multi-colored necklaces and a black and white flowered purse.

One of my favorite adaptive tools, a reaching stick, can be found in nearly every room of my house. They are strategically placed; you can see three different kinds hanging on the same organizer rack as the necklaces in my bedroom (I brought 2 home from college), another resting on a hook in my bathroom, and so on. If you’re not familiar with the wonders of reaching sticks, allow me to wax poetic about them for a moment. They are amazingly clever tools made of metal and plastic. Also known as grabbers or reachers, reaching sticks may as well be known as a key to independence for me. I’d say I drop things or knock things over at least three times a day, if not way more than that. While I’m lucky to be agile enough to bend down and reach larger items off the floor, I have elbow contractures that often make it difficult to reach the distance from my wheelchair to the ground, especially to retrieve smaller objects. Assuming I don’t knock over something like, say, an entire box of little colored beads from my craft drawer, or my entire bottle of multivitamins, it’s never difficult to pick up after myself with my trusty reacher. It eliminates having to rely so much on other people for help, and I’m sure my dad appreciates fewer exclamations of “Oops! Daaaaaaa-ad!” following the sound of a crash.

Using a pair of kitchen tongs to pick up M&M’s candies.

Of course, it would look a little silly to always carry around a giant reaching stick. I suppose I could refer to it as my scepter, since I sit on the royal throne of my wheelchair…But in reality, my mother, who is also a fan and frequent user of reachers, has come up with a rather inventive solution to avoid the looks one might receive when toting around a long metal stick with a claw: carry a pair of kitchen tongs instead! I mean, there’s nothing less silly than kitchen tongs, right?! (A word of warning for all novice adaptive kitchen tong users: be cautious not to bring them into restaurants with salad bars or house ware stores like Bed, Bath, and Beyond. You might end up having a lot of explaining to do if people think you’re stealing things!) In all seriousness, though, using tongs as a smaller version of a reaching stick demonstrates one of my favorite ideas: disability breeds creativity.

Because I was born with my disability, my life has always necessitated creative adaptations to make things easier or more accessible. Over time, thinking up creative solutions has become the norm for me to be as independent as possible on a daily basis. For instance, in most houses, you might find an ottoman near a big comfortable chair for people who are inclined to put their feet up at the end of a long day. And while I definitely love to put my feet up in the evening, you won’t find me using my ottoman to rest. While most feet end their days with an ottoman, mine start the day with one. I have a small ottoman right next to my desk in my room, ready and waiting for me when I’m about to put on my shoes.

Putting on my shoes by resting my leg on a turquoise ottoman!

When I was younger, I needed help putting shoes on every morning because I couldn’t reach my own feet. (I know, you’re wondering why I didn’t just use a reaching stick if this is a reaching issue, but alas, a reacher cannot solve everything.) By the end of elementary school, however, I realized that I didn’t want my parents to assist me in getting ready every morning for the rest of my life. So, we problem solved, searching for items at the perfect height for me to lift my legs onto so I could reach to slip on my shoes. After lots of searching, we found a display of small turquoise ottomans at, you guessed it, Bed, Bath, and Beyond! (Don’t worry, we didn’t bring the kitchen tongs with us!) Now, I don’t have to give a second thought to the daily task of putting on my shoes, all thanks to a little creativity and brainstorming.

Adapting things to meet the needs of my disability is not always quite as simple as taking a quick trip to my favorite house wares store, but I embrace little victories and creative solutions. If everyone, disabled and nondisabled, took the time to consider the ways in which we must all adapt, and the ways that many barriers or obstacles are unnecessary and even preventable with a little creative thinking, this would be a fantastic step in the right direction for disability access and equality.

What are your favorite adaptive tools or ways to adapt things? I love to learn new creative ideas!

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Independence-Driven: Facing Fears and Striving for Independence

After taking an extended hiatus from driving lessons to complete my last semester of undergraduate courses and to do an internship in Washington D.C., I will be getting behind the wheel again tonight. And to tell you the truth, although I’m definitely excited, I’m also just a bit terrified.

I am learning to drive an adaptive vehicle with hand controls for the gas and brake, a ramp that opens on the side so I can enter the vehicle, and a power adjustable driver’s seat that moves and rotates so I can easily transfer. I had always hoped the process of driving would be a breeze for me; I would simply put one hand on the gas and brake, my other hand on the steering wheel, and off I’d go into the sunset. But, that obviously isn’t quite how driving works, so I’ve experienced some bumps in the road – pun intended. While I know that driving requires tons practice for anyone, disabled or not, finally getting my license holds particular urgency for me. Unlike most of my friends who were cruising with their learner’s permits and licenses by the time we finished high school, I spent the vast majority of my senior year stuck in my house recovering from major spinal surgery. By the time I could finally turn my neck enough for it to be possible to check side view mirrors, my friends were already driving circles around me.

I was jealous of them for all the typical teenage reasons – driving was the cool thing to do – but there were some other deep-seated emotions that were unearthed by being the only one who couldn’t drive. My dad has practically been my chauffeur for 22 years, and though I love him and appreciate everything he does for me immensely, by high school it stopped being cool to have my dad drive me to go hang out somewhere on a Friday night. My friends tried to help when they could by offering to drive me places, but this posed challenges too. Since I have a mobility-related disability, it’s not particularly easy to get in and out of cars. If I’m getting a ride in a sedan, I can climb in with a boost or the help of a step stool. When someone offers me a ride in a truck or a van, forget it. And Long Island certainly isn’t known for speedy, reliable, accessible public transportation. So, by default, I’d often get left out of fun plans, or have to leave early so my dad wouldn’t have to come out to get me at all hours of the night.

You’d think all of this would have motivated me to learn to drive the second it was possible. Yet, instead of getting behind the wheel as soon as it was safe for me, my family and I kept finding excuses to put off lessons. Of course, it wasn’t all our fault, since registering for adaptive driving lessons through the state can be quite a lengthy process. Also, there’s practically a monopoly on adaptive driver’s education on Long Island, because there are very few people in the business. This makes it rather difficult, because my dad will have to leave work early every weeknight to drive me to a place that’s an hour away from my house just so I can take lessons. This isn’t exactly a model of an accessible situation. Actually, it’s frustratingly ironic that getting to and from driving lessons necessitates knowing how to drive. Because of so many complications, even though I did begin driving lessons last year, there have been a few false starts that prevented me from attending lessons with any regularity. However, I am fully aware that in spite of some difficulties, I definitely didn’t pursue driving as much as I should have. Though I could have made time for it, I became complacent, secretly feeling relieved that other life events meant I wouldn’t have to be on the road. I was letting my strong anxiety win over my strong desire for independence. I’m generally a confident person and fast learner, so the anxiety I feel about driving is unusual for me. That being said, it is human to experience certain fears, and I know that with hard work and perseverance, I can overcome mine.

With driving lessons beginning again tonight, for real this time, I’ve had to do some soul searching. Is anxiety a good reason to hinder my own independence? It’s bad enough that society too often hinders my independence due to attitudinal barriers and lack of access for disabled people; I shouldn’t hold myself back too. I still feel anxiety because I may mess up, and I am pressuring myself, because time is of the essence to be successful in getting my license. Having a driver’s license won’t just make it easier to hang out with my friends. It will open up a world of possibilities for everything from being able to go to a store at my own will, to being able to search for employment in a wider range of locations because I’ll more easily be able to get myself to and from a place of work.

I realize that driving is not an option for all disabled people, so I am truly lucky that it’s an option for me. And I think my driving anxieties can in some ways translate to anxieties that stem from striving for any form of independence – be it leaving home, advocating for yourself, or any other movement, no matter how small, in the direction of being as independent as possible. Ultimately, you just have to get out there and go for it, reminding yourself that although moving forward and accelerating with the gas pedal seems scary, you’ll eventually reap the sweet rewards of gaining more independence.

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Supporting United States Ratification of the U.N. Convention on the Rights of Persons with Disabilities – Why Every Voice Counts!

This post can also be seen on another great disability resource website, Ollibean: https://ollibean.com/2013/11/22/ratify-crpd/

I have a confession to make:

I can only vaguely recall skimming the e-mails that made their way to my inbox in late November and early December last year that called upon the disability community to contact their senators in support of U.S. ratification of the U.N. Convention on the Rights of Persons with Disabilities (CRPD). It’s not that I didn’t realize the importance; I just thought to myself “Oh, I should help. But what does it matter if I don’t contact senators? I’m just one person and I doubt my voice will make a huge difference.” However, after living and breathing pro-CRPD activism every day for the entire duration of my summer internship, I’m deeply disappointed in myself for having previously believed that my advocacy efforts wouldn’t be heard.

I find that the “I’m just one person and I won’t make much difference” mindset is found all too often in cases of advocating for disability rights. Though the disability community spreads far and wide to all corners of the earth (as we are the world’s largest minority group) we do not all band together to advocate for important causes nearly as much as we should. But now, along with so many other advocates, I’m calling on everyone in the disability community – those who have disabilities, allies, and even people who just have good old-fashioned common sense – to move beyond the idea that other people will pick up your slack when it comes to rallying for United States ratification of the CRPD. It is everyone’s responsibility to join together and advocate. Call your senators. E-mail them. Tag them in a tweet. We’ve got to reach out as much as possible to make the truth about the positives of the CRPD known! The disability community must actually embrace the idea of working together as a community to educate opponents of the CRPD and to dispel the campaigns of myths and inaccurate propaganda against the CRPD.

So, what can you do to help get the CRPD ratified?

If you’re like I used to be and have the initiative to advocate but don’t quite know where to start, there are so many fantastic resources online, which I’ll provide links for at the end of this post. Keep in mind that the most important thing is to first educate yourself on the invaluable merits of U.S ratification of the CRPD. Get the facts! Take some time to read through the information. Then, spread the word! You’ll see that many disability rights advocates have done the hard work and research that will help you reach out to senators! Just use the wealth of available facts on the CRPD so you’ll know exactly what to say. There’s even a phone script with talking points (that I’m proud to say I wrote), pre-written tweets, and form e-mails. Advocating in support of the CRPD is really simple!

Our work is far from done and we can’t stop showing senators how crucial it is to ratify the CRPD. If you live in a state where your senators already voted in favor the first time around, it’s still important to reach out and ask for their continued support and assistance in reaching out to senators who don’t support ratification. And if you live in a state where your senators voted against ratification of the CRPD, then it is absolutely critical to advocate for the facts about the CRPD and help put an end to misinformed opposition. Let’s show the senators who voted against the treaty just how much the disability community needs their support! Remember, you may think you’re just one small person, but if we all work together, we can help the U.S. ratify the CRPD and work towards achieving immense positive change in global disability rights.

Helpful Links to Get Informed:

http://disabilitytreaty.org/ A website on the CRPD (also known as the Disability Treaty) hosted by the U.S. International Council on Disabilities

http://aucd.org/template/page.cfm?id=853 A wealth of resources and information on the CRPD hosted by the Association of University Centers on Disabilities (AUCD)

http://www.state.gov/j/drl/sadr/disabilitiestreaty/index.htm Information on the CRPD from the U.S. Department of State

http://wecandothisifwetry.blogspot.com/ A blog that explains facts about the CRPD in simple terms

http://www.usicd.org/index.cfm/convention Full Text of the CRPD

http://www.c-c-d.org/fichiers/CCD_Inter_TF-Neglected_and_Abused_Abroad.pdf Neglected and Abused Abroad: A Look at the Severe Mistreatment of Individuals with Disabilities Around the World and How the U.S. Can Help

Helpful Links to Get Involved:

https://www.facebook.com/RatifyCRPD A Facebook group that provides regular updates about CRPD advocacy efforts

http://www.aucd.org/template/news.cfm?news_id=9186&id=17 Sample tweets in support of the CRPD

http://www.aucd.org/template/capwiz.cfm Action center where you can access a phone script and send tweets and e-mails to senators hosted by AUCD

https://www.facebook.com/Students4crpd A great Facebook group to join the efforts of younger advocates!

https://twitter.com/WeCanDoThis13 The Twitter account that accompanies the RatifyCRPD Facebook

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