Cost- and Eco-Friendly Ways to Making Your Home More Wheelchair Accessible

By Caroline Hampton


If you’re one of the 2.2 million people in the United States who depend on a wheelchair for mobility to aid in your day-to-day life, you know just how important quality home access is. From exterior gravel walkways and driveways, elevated entrances, and narrow doorways, to impossible flooring surfaces and inaccessible counter tops, your home can be filled with challenges.

In a 2016 study published in the International Journal of Environmental Research and Public Health, participants with various functional limitations saw major benefits from home modifications. They included a reduction in falls and injuries, improved psychological effects that came with feeling more safe, and a positive effect on their quality of life.

With these great benefits in mind, it might be time to consider some ways you can decrease your frustration and increase your mobility. Let’s examine some cost- and eco-friendly accessibility home modifications.

Celebrate overcoming adversity through the film COMING TO MY SENSES and its corresponding grassroots #ColorMySenses digital campaign!

 
In 1999, Aaron Baker broke his neck in a motocross accident, leaving him completely paralyzed from the neck down. Despite doctors' grim prognosis, over the next 16 years Aaron decided not to listen to those who said 'he had a million-to-one odds of ever feeding himself again' and instead endeavored to regain as much mobility as possible. This journey through the unknown took him from the depths of depression to the joys of cross country road tripping via tandem bicycle with his mother and friends, and finally, culminated in his opening a socially conscious low-cost gym focused on increasing mobility for the disabled. Now, in COMING TO MY SENSES, we watch as Aaron takes one final journey which symbolizes his recovery: to cross a 20 mile tract of Death Valley unsupported on foot. But will he make it?



Though COMING TO MY SENSES chronicles the recovery of an individual suffering a high-level spinal injury, the film is much broader in scope and application that individuals of all stripes can take away a message of perseverance in the face of disheartening odds.






In conjunction with the film’s upcoming community screening tour and larger impact campaign, we are inviting you (and your organization) to participate in our grassroots #ColorMySenses digital campaign.

Life with a SCI: Important Health Care Providers

By Patty Kunze, RN, BSN and Roberta Palmer, RN

It’s important for all of us to have a health care provider to help manage our health care needs.  For most people, that means having a local family doctor that we trust to care for us.  This provider may also be known as your Primary Care Physician. However, life with a Spinal Cord Injury (SCI) changes the scope of care many of us may need to care for our new bodies, especially early on.  I never gave this topic a thought after my injury, as there were so many other things that seemed more important to focus on when I got home from the hospital.  Yet, getting the ball rolling to find the right types of health care providers is just as important.  We need to learn what to expect from our bodies and who can help us to care for them so we can stay healthy.   Following is a list of types of specialty physicians that you may encounter or call upon to keep you in good health when living with a SCI.

PRIMARY CARE PHYSICIAN:   A primary care physician can be thought of as your medical home. He or she is the first healthcare professional you contact when you have a question or need. This is the doctor who can handle a variety of medical problems, who provides preventive care and advice, who maintains your medical history and can refer you to specialists when needed.  


10 Reasons Why We are Thankful for Our Disability

By Wendy Crawford & The mobileWOMEN.org Team




Over 32 years ago, I lay in a hospital bed with a metal halo screwed into my skull, immobilizing my neck. I had a C5/C6 injury due to a motor vehicle accident caused by a drunk driver. I was paralyzed from the collarbones down, parts of my arms and my hands and needed a tracheotomy to breathe. I was scared, depressed and angry. How could this happen to me? I was independent, adventurous and athletic. This does not happen to people like myself. I didn't know where I was going to live nor how I was going to manage physically and financially. If someone told me then that someday I would actually be grateful in some ways for my disability, I would've screamed at them that they were out of their mind!

But the years passed and I began to realize that this massive hurdle that was thrown at me as a young adult, came with unexpected gifts that slowly rose to the surface, often difficult to identify through my tunneled negative vision.

The older that I get, the more in touch I am with myself and the more that I have learned to embrace the positives. We all have obstacles, relatively speaking, that are overwhelming at times but if we force ourselves to look introspectively, we will see that those challenges are actually the tools that have sculpted us into the person that we have become.

Diabetes with Spinal Cord Injury: November is Diabetes Month


By Patty Kunze, RN, BSN and Roberta Palmer, RN



Years ago, someone came up with the idea to recognize a condition each month.  For example, September is spinal cord injury month, October is Breast Cancer awareness month, and November is the month of diabetes awareness.  Awareness months, weeks, and days are important because they allow people with certain health conditions, along with their loved ones, advocacy organizations, and support groups, to rally around a common cause: health. Educational, fundraising, and support events are often held during these times.  Upon our investigation, two different sites did not list September as being Spinal Cord Injury Month although Congress designated it to be so in July 2015.   It would be interesting to know if only the U.S. spinal cord injury population is raising awareness during the month of September but that’s another story.  

Step Change Studios: Breaking the Boundaries of Ballroom

By Rashmi Becker

Founder, Rashmi Becker (on left) with dancer, Laura Dajao
Born in London, England, I started out as a competitive ice skater and began dancing to help my skating. As the younger sister of someone with Autism and learning disabilities, I became aware of the benefits of dance from an early age. Music and movement were a fantastic way, for my brother and me to connect and for him to communicate, manage his anxiety, develop coordination and to just feel free.

As an adult, I began working with people with learning disabilities and continued to see the benefits of dance, as well as recognize hidden talent. I became involved in various advocacy activities to support disabled people to have a voice and to have the same opportunities to participate in society, as everyone else. I continued to dance socially throughout my adult life, developing a love of Latin and Ballroom dance. In 2012, I performed in the Opening Ceremony of the London Olympic Games which was an amazing experience that drew a diverse community together in celebration.

In 2013, I became a Board Member of the English Federation for Disability Sport and in 2016, a Patron for a wheelchair dance charity. Both roles reaffirmed my commitment to improving opportunities for disabled people to be active, included and to be able to dance, compete and perform alongside their non-disabled peers. I also began performing at community and charity events and saw how much people enjoyed dancing or wanted to dance but had few opportunities to do so. The turning point came when I enabled two ladies with disabilities, to realize their dream to dance by performing at a black-tie ball and I knew this needed to be the norm not the exception.

Inappropriate Questions: What Not to Ask

By The mobileWOMEN Team


OK, let's face it. Often when you use a wheelchair for mobility, you are a target, for not only staring but sometimes, for very strange or inappropriate questions. Most people have good intentions but sometimes you just have to shake your head and wonder why they think it's OK to ask these questions.

Often it stems from a lack of knowledge when it comes to disability. Sometimes, it feels like you are a rarely-seen mystical unicorn! Gradually, this lack of representation is changing with more inclusion and diversity in the media, television shows etc. but we still have a long way to go.

When on the receiving end, sometimes you just need to roll away but ideally it is best to try to educate people and help them to understand that we are just the same as everyone else. Once they see the commonalities that exist between us, those barriers will gradually disappear. It is our hope that this article can be a learning tool towards that goal, so please share with your able-bodied friends.

That being said, we approached some mobileWOMEN contributors and asked them to share a few of the strangest (or most inappropriate) question(s) that they’ve ever been asked.

"Were you injured because you were hit by a train?" asked the woman who walked across the hall from me.
   "Ummm, no."
   "Oh because I once heard about that happening to someone and I thought it might be you."
   "No, wasn't me."

“Do you know my friend so-and-so who is also in a wheelchair?”

mw Comment: One in five people have a disability so there are literally millions of us. We do not all know one another and we all are unique, in every way. It’s kind of like meeting someone who is Chinese and assuming that they must know your Chinese neighbor!

My Hurricane Shelter Experience with Tips


By Kirsy Rodriguez

Around this time last year, I experienced staying at a shelter for the very first time. Something that I honestly never thought I would have to experience.

You see, prior to moving to Florida three years ago, I lived in Brooklyn, New York. Hurricanes in that part of the country are very rare and the closest that I’ve ever come to experiencing a hurricane, was when Hurricane Sandy came to the New York area. I was in a safe area so we didn’t have to go to a shelter. Not that that option was even in my thoughts, honestly. As many New Yorkers, I just prepared very much like I did plenty of other times during blizzards; I stocked up on food (mainly junk food), water, flashlights, extra batteries and a few candles, in case we lost power.

When I moved to Florida, I learned that hurricane season is alive and well in this part of the country and that stocking up on the essentials is great, but I also needed to have a secondary plan. That secondary plan involved knowing where my closest wheelchair accessible shelters were, in case we were going to be hit by a major hurricane.

Our first lesson in staying at a shelter came last year, during Hurricane Matthew. My family and I, honestly didn’t know what to expect and you can say that we were a little underprepared when we went in. I guess that always happens when it’s your first time experiencing something new like this. This year however was a little different when we went to seek shelter from Hurricane Irma, and we have Hurricane Matthew to thank.

So with that said, below I will share with you my top personal tips when going to a shelter. My prayer is that you never have to use these tips but in case you do face such a situation, I hope that these points may be of some help to you in being prepared and knowing what to expect.

Gadgets for Independence Series: Beauty

By Wendy Crawford & Kirsy Rodriguez


Some of you may have been following our “Gadgets for Independence” Series for those with limited hand function (although these gadgets can make life easier for anyone!). So far,  we shared with you some helpful gadgets that are specifically for cutting items like packages, paper, envelopes etc. and gadgets to be used in the kitchen.

For our next “gadget” topic, we have chosen an extremely important one, especially with the upcoming holidays which will be here before you know it: Beauty :-) Let’s face it. There are some tasks that you want executed just right and can not easily be delegated to others and this is one of them! Typically, most aides don’t have the background or experience to be a hairdresser or makeup artist. That’s where Youtube videos and some helpful gadgets can help you to achieve your “beauty vision”. Being independent can be empowering and liberating!

We have compiled a list of some of our favorites that cover makeup, nails and hair. We haven’t  tried all of them yet, although looking forward to giving them a shot! We do not receive any reimbursement for promotion.

We would love to hear your suggestions too so please share them on our mobileWOMEN.org Facebook page. If you are not a member yet just send us a request and we’ll be happy to grant you access.

Universal Grips
To start, we’ve listed some universal grips that can be used on any handles whether it’s for beauty tools or other purposes in your daily life.

Foam Tubing for Grip: These inexpensive cylindrical foam tubes come in various diameters which can be cut with scissors to desired length to increase grip for makeup brushes, mascara, eyeliner, hair brushes etc.

Hand Grip: This universal sleeve can be used on utensils like hair brush, makeup handles etc. It can be easily removed and reused throughout the day.

Nails
Often I’ve resorted going to a nail salon even though I just need my nails cut and filed. This can get costly and time-consuming. We searched around to find these options that with a little patience and practice, could do the trick! (Note: Those with no sensation, need to be extremely cautious.)


In-Depth with "Patti+Ricky"


By mobileWOMEN Team

Founder, Alexandra Connell
If you are on social media lately, you may have noticed that the Internet has been abuzz about a new company that sells functional fashion for people with disabilities called “Patti + Ricky”. What caught our attention was the fact that they refer to themselves as an “online department store for people with disabilities”! Whaaaaat? Sounds interesting but what exactly does that mean?

Their website features products from 20+ different designers, many of whom live with disabilities themselves. To better understand this "new to our community" concept, we decided to get up close and personal with “Patti & Ricky”. See below, our in-depth interview with founder and “Creative Energy Officer”, Alexandra Connell: 

Mw: What inspired you to start your company? Who is PATTI + RICKY? How did you come up with the name?

AC: I saw a need for a marketplace that offered stylish and functional clothing that catered to people of all abilities. Thinking back, there were many experiences in my life that led me to find PATTIandRICKY.com. Both of my parents worked in the New York City fashion and accessory industry. Conversations in my home included what would be the next fashion trend or what was going to be the “it” colors for fall. I like to joke that I was born into retail and it’s in my blood.

I also grew up with dyslexia and ADHD. During and after college, I worked for nonprofits focused on fostering inclusion. Much of that time inspired me to earn my masters in disAbility Studies. 

Camping in The Sierras

By Emily Ann Hupe


 
Emily & husband on trip
In August, the hubby and I went camping with the Walking Trout Foundation. We had met Steve and Charles at the Triumph Foundation Sports Festival in Los Angeles in April. There were these two guys in their forties, sitting by tents that were large enough to accommodate wheelchairs - I was intrigued. However, I became an RV camper while I was still able-bodied so the last time that I slept in a tent, was 1998. I grew up tent camping and I loved it; there is just something about waking up in the mountains in a tent. However, the idea of sleeping in a tent as a paraplegic did not seem like a lot of fun. Steve explained that they take care of everything and it is at no cost to the campers including a guest of their choice so I decided to give it a try! I am always up for an adventure and Steve and Charles were VERY persuasive.
Walking Trout Founders, Steve (on rock) Charles behind on left) & Crew
The Walking Trout Foundation is a group of friends who are longtime backpackers and campers. After years of backpacking and camping together, the guys decided to help take people with mobility limitations on camping trips so they could experience the beauty and majesty of the Sierras.  In 2013, Steve and Charles advertised the first trip by posting flyers at rehab facilities. Tents, sleeping bags, and vehicles were rented, and Steve and Charles took 13 people they had never met to Rock Creek Lake in the Eastern Sierras. The trip was a great success, and the Walking Trout Foundation was born. 

Gadgets for Independence Series: Kitchen

By Wendy Crawford & Robyn Keller


In our last “Gadgets for Independence” article, we shared with you some helpful gadgets for those with limited hand function that are specifically for cutting items like packages, paper, envelopes etc. For this article, we would like to focus specifically on utensils that are for the kitchen.


When I was younger, cooking was not very important to me. I had my injury at 19 years old and making dinner was the last thing on my mind! Now, I actually miss the occasional times that I would cook or bake and would love to expand my skills.


Also, the older that I get, the more important it is to me to nourish my body with nutrient dense, nonprocessed and organic, when possible, foods. Most of the time, this requires making your own meals unless you are fortunate to have a restaurant that serves healthy options close by but that gets expensive!


For many, food is a passion (I’m one of them!) and cooking as a way to express yourself and your love for others. It can also be relaxing and therapeutic. Robyn (mobileWOMEN.org Outreach Coordinator and hard-core foodie) is my inspiration and has been cooking for many years with her C6/7 level spinal cord injury, researching recipes and preparing amazing dishes! (Watch her in action, in her Reeve Minute cooking video.)

Warm Temperature Regulation


By Patty Kunze, "The Rollin RN"

I am sitting at my desk with record setting temperatures outside, and thinking about spinal cord injury and our body’s inability to regulate temperature.  It’s just another ‘thang’ we are unable to perform.  But why does that happen to spinal cord injured individuals?  Why are we powerless to regulate our bodies in hot and/or cold?  Since its summertime, I wanted to discuss the whys and hows to normalize during balmy outside temperatures and how to provide a comfortable environment while sitting in our chairs.

A normal, healthy human is able to maintain a constant body temperature of approximately 98.6ᵒ F despite the temperature of the environment. In a hot environment, the body sends a signal to the brain via the spinal cord to say the body is overheating; the brain then sends a signal back down the spinal cord and tells the body to cool itself by perspiration which evaporates and cools the skin.  This is defined as a “normal” individual.  This definition does not apply to spinal cord injured(SCI) individuals.  The signal is halted at the level of injury.  These definitions can easily explain why I can sit in a room and suffer from heat and my poor husband is wrapped tightly as a cocoon in his blanket. When I get hot, it will take me twice as long to cool down.  Same occurs during a fever associated with illness.  If a high paraplegic or quadriplegic is in an outside temperature over 90 F, especially when the humidity is high, the body temperature will begin to rise.  The ability to sweat or to make goose bumps may be lost below the level of injury.  It will take longer to cool down after a spike in temperature.  A LOT longer!!!!

Gadgets for Independence Series: Cutting

By Wendy Crawford & Robyn Keller

At a recent dental checkup, my dentist examined my teeth and then proceeded to talk to me about my “Grinding teeth at night Issue” and that I needed to be fitted for a special retainer. He explained to me that it would prevent me from wearing my teeth down any further while I was sleeping. He asked his assistant to go over the pricing with me and begin to take molds of my teeth.


Once I heard the price, I put on the brakes. I was racking my brain while he was talking and wondering if I really grind my teeth at night. I don't recall ever doing it nor anyone mentioning it to me before. Then suddenly it struck me! I use my teeth on a daily basis as an opening device ( since I have limited function of my hands). I rip open envelopes, lids, you name it! When I mentioned it to the dentist, he showed me, with a mirror, how some of my teeth had flattened. He explained that these seemingly harmless actions, repeated many times a day over many years, takes a toll on your teeth and wears them down.

In one way, I was relieved that we found the cause and I didn't have to pay the exorbitant price for the retainer but then I realized I had an even bigger problem - how was I going to do these things independently?

Finding Home

By Emily Ann Hupe

One of the first things that I remember about our old house and property, was the smell. As we got out of the car, the first day we looked at the property, I inhaled deeply, the smell of the pine trees. I closed my eyes and let that smell envelop me and it created such a peace. I have so many memories of camping and canoeing associated with that smell. These were times during my childhood that I was truly happy.

The view from the kitchen window was not the best in the house, but it was the window I looked out of the most. I could look into the front yard and see the children play. Whether I was cooking, talking on the phone or getting a drink in the middle of the night, I looked out that window.
 
I always left that kitchen window open during summer evenings. In the middle of the night, I would get a drink and pause a moment just to listen. The crickets always arrived around late June. As the sunset after a hot day and the cool winds would blow, t he crickets would begin their song. I hear it now and it takes me back to my kitchen, my window, my home.
It was at that window in October of 2003 that I heard the words, She is gone, I am sorry.” It was in the pre-dawn hours of a Friday morning that I learned my mother had died. I would never again be able to stare out that window again without thinking of my mother.

I stood at that window breathing through the pre-labor pains that would bring my sweet, precious Wyatt into this world. As I watched the sunrise that September morning in 2002, I had no idea how this child inside of me would change our lives. There were moments that he would drive us to our knees in frustration and sadness. Then, just as quickly he would melt our hearts and amaze us with his deep thought and intensity. 

How I Conquered My Very First Speaking Experience

By Aimee Hofmann



The Race for a Cure Gala to benefit the Christopher & Dana Reeve Foundation took place on June 17, 2017 in Westchester, NY. The idea to hold the event first ignited when my husband, Daniel, decided to take on the 2017 NYC Marathon with his friend, Michael, under “Team Reeve”.  We saw this as a great opportunity to contribute to the Foundation since they provided us with so many resources when I became paralyzed, 11 years ago.  My friend, Karina (Michael’s wife), and I immediately took on the exciting mission to plan a fundraiser for the very first time! 
 
We knew we wanted to have a guest speaker with a spinal cord injury/condition to share their story at our event.  Little did I know, it would be more challenging than I thought to find a speaker.  Most of the admirable people that I had in mind, were unavailable or had expenses that we couldn’t cover in our event budget. 

As days and weeks passed of planning the event, we still had no speaker.  Wendy Crawford, a co-founder of The Raw Beauty Project and mobileWOMEN.org, was one of our potential speakers, but was also unavailable.  Wendy then suggested that I should be the one to think about speaking.  I never really saw myself as a speaker.  I’ve always been more of a writer since its obviously so much easier to type words out, as opposed to actually saying them.  Karina also asked me how I felt about speaking.  To tell you the truth, I was avoiding the situation altogether.  I told her, "I'm just going to thank everyone and wish everyone a great night!"  There I was, trying to make excuses to get out of doing a speech.  Karina looked at me and said, "Thank everyone and then WHAT?!  Don't you want people to go away with a lesson they’ve learned from your story?"  She did have a point.

Wheelchair Falls Resulting in Concussions

By "The Rollin' RN" Patty Kunze, BSN, RNC

My articles are usually written on maintaining health but I wanted to expand on a question asked earlier and further discuss CONCUSSIONS and WHEELCHAIR FALLS.  Concussions, in general, have been in the forefront of Sports Medicine lately, with the increase of head injuries in football and soccer alike.  No longer is this type of injury “accepted” as part of performing sports; experts are looking at this phenomenon from a different angle now.  Sitting in a wheelchair on a daily basis increases our chances of a fall, where we may strike our head, which results in subsequently, a head injury or concussion. It’s a fact of our life - but should not be ignored!  Why else would the rehab team train us how to protect our noggins in case of a fall?  I KNOW it has happened to all of us and if you are one of the lucky ones that hasn’t experienced a fall yet…..you will.  Being in a wheelchair for eight years now, I have experienced two major falls while seat-belted in my chair.  Once backwards onto a concrete tiled floor, causing a huge goose egg on the back of my head and once on the aggregate driveway of my home resulting in a scraped up face.  You all remember the Looney Tunes cartoons when the character is bopped on his head and stars circle around him, that’s what it feels like... But this topic is no laughing matter.   


My Roll on Capitol Hill



From Kara Aiello
 
Flash Mob near Capitol Hill Kara is 3rd from right)

About two weeks ago, I participated for the second time in an amazing event known as the Roll on Capitol Hill or ROCH in Washington D.C.  Sponsored by United Spinal Association, ROCH in an annual legislative advocacy event that addresses issues that impact the health, independence and quality of life for individuals living with spinal cord injuries and disorders.So every summer, people with and without disabilities come together in D.C. for four days to learn, advocate and educate to our Congressional leaders' policies affecting the everyday lives of people with SCI and related disorders. Although I do not live with a SCI, having a disability from birth (Osteogenesis Imperfecta-Brittle Bones) makes this event as important for me as all involved, since the policies on the table affect us similarly.  What these policies give to us as individuals, helps us to give back and be contributing members in our communities, which makes a better world for everyone.      
   
The event isn’t all work, as important as that piece is; it’s also loads of fun and a great way to meet people around the country who, regardless of disability, share a common experience.  It’s not to say that our disability experiences aren’t different, be it we are newly injured or face a disability from birth, but it’s nice to meet other wheelchair users or people who have shared experiences and can relate.  Examples of shared experiences include being stared at (not that we don’t check each other out too, ha ha), or being around persons who are standing and tower over us (although I met some chair users who towered over me as well). And it was nice to talk to people eye to eye, joking and laughing about shared events and experiences in our lives that aren’t always understood out in the world.  But it’s also important to add that people who are there and don’t live with disabilities bring their own understanding, compassion and experience to ROCH, United Spinal and our own personal lives.  We have board members who have loved ones who live with SCI or related disabilities, rehab staff who spend their lives helping people regain a quality of life out in the world, and countless family members and friends who want to be a part of their loved ones’ journey, and that makes for a great community of which to be a part. It’s also the only event I have attended where I have met more than two people with the last name of Aiello and are not blood relatives, and all we can say is,“I never meet anyone with my last name.”   

Crazy to Most, Normal to Us

By Emily Ann Hupe


When I walked into the hospital for my scheduled c-section on November 17, 2004, I had no idea that those would be the last steps that I would ever take, as an able bodied mom. A rare complication during my procedure, caused a bruise on my spinal cord at T 11-12. I had no feeling from the hips down on my right side, some feeling on the left and no bowel or bladder control. I was now a full-time wheelchair user. Waiting at home for me, were my 6 other children ages: 11, 9, 7, 5, 4 and 2. I had no idea that cold November morning, as I stared down at the perfect face of my youngest child that the next 12 years would nearly destroy our beautiful little family.

I would have over 10 surgeries numerous complications and procedures over the next 12 years. The first 2 years, I lived in constant and excruciating pain. There were countless doctor appointments and procedures. I was in a constant state of "preparing for" or "healing from" something. During this time, I was desperately trying to "mom" from what I came to refer to as "the worst seat in the house". Life for me was measured in hours between pain medication and how many good days that I had in between surgeries or complications. We have home schooled all of our children, so that further complicated my situation. We spent most days in my room and bed, during those first 2 years.
Dinner time!
Slowly we settled into a new normal. My husband is self employed so he was home most days. He would get up at 4:00 AM, work until 8:00 AM in his office and then help get the kids and me up for the day. He would then be Mr. Mom for the day and return to his office after dinner until the bedtime routines began. Often times, he would work late into the night as well. We did not have family close by and we lived 45 minutes from most of our friends in town. People pitched in, at times, and were amazing. However, the reality was that everyone was busy with their own lives and we were on our own most of the time.

The Impossible Dream Becomes a Reality


Deborah, at the helm of The Impossible Dream

Over two years ago, we featured mobileWOMAN Deborah Mellen, an avid sailor & a philanthropist who is now sailing the world and educating others about the possibilities for people with disabilities.
Deborah’s story began tragically as many do, when she became paralyzed in her mid-thirties, in Tuscany Italy. Originally from New York, Deborah and her Italian photographer husband, moved to his hometown in Tuscany to experience adventure and hopefully raise their future children there. Unfortunately, this dream was shattered due to a motor vehicle accident. 

Needless to say it was a long journey to recovery for Deborah, requiring many surgeries, support and emotional strength. One activity she found therapeutic and life-saving was being on the water.
“Most of my rehabilitation was done in Miami, Florida and it was there that my surgeon put me in touch with Shake-a-Leg, an organization devoted to bringing the experience of sailing to people of all abilities. I fell in love with the beauty of sailing, the wind, the water, the silence and peace. Water was an element that offered me the physical freedom that I no longer found elsewhere.”
 
Deborah & her dog, Winter enjoying peace & tranquility

The Universal Design Toolkit and the Universal Design Living Laboratory



By Rosemarie Rossetti, Ph.D.
Rosemarie with her husband, Mark (& kitty!) at home
My Story


On June 13, 1998, my husband Mark Leder and I went for a bicycle ride on a rural wooded bike trail in Granville, OH. After riding for a few minutes, Mark thought he heard a gunshot and slowed down to investigate.  As he scanned the scene he saw a large tree falling. He shouted, “Stop!” But the warning was too late. Instantly, I was crushed by a 7,000 pound tree and paralyzed from the waist down.
Coming home from the hospital in a wheelchair in July 1998 after my T12-L1, spinal cord injury, I realized how my home intensified my disability.  My husband and I knew that we had to sell our home and find something more suitable.


Designing and Building the Universal Design Living Laboratory

My husband is 6'4" tall while I am 4'1" seated in my wheelchair.  Our heights and reaches were factors in the home design so that we were both accommodated.

In September of 2004 we hired architect, Patrick Manley to draw the house plans for our new home.  In January 2005 we hired kitchen and bath designer and internationally renowned universal design specialist Mary Jo Peterson.
We hired Robert August in October 2005 to help us with branding, marketing, and contacting international and national corporations to partner with us by contributing products and services.

Mark and I bought an acre and a half lot in December of 2006. We broke ground on September 23, 2009. In addition to being accessible, universal design and green building construction principles were followed.  We received the highest levels of certification from three universal design national certification programs.

We acquired 214 contributors and had hundreds of people volunteer to help us.  Our home could not have been built without their support. Mark and I have personally funded the Universal Design Living Laboratory and served as the general contractors.
 
On May 18, 2012 we moved into our new home.