Raising a Child When You Have a Disability

March is for motherhood. My daughter was born March 5, 2008. I remember when I found out I was pregnant. I was terrified. At the time, social media wasn’t a super common way to connect with many people. I didn’t know anyone who was a mom in a wheelchair. I felt like I was completely unprepared for what was coming. For everything! Not to mention, I was going to do it alone. I started looking for anything I could find on the internet on raising a baby when you have a disability, but the information was limited.

My pregnancy wasn’t bad. Everything I experienced seemed pretty common. I had nausea and uncomfortable moments. As I got farther along in my pregnancy, I learned that I had to be careful when I transferred pretty much anywhere. She was much more active and her movement could cause me to lose balance.

Learning to Adapt with My Disability

After she was born, I learned how to do everything my way, like how to strap her to my lap so I could roll and carry. I found a crib with doors that opened forward instead of up and down. I discovered how to help her get on and off the floor and learned how to push a stroller. Plus, I figured out how to get her car seat in and out of the car. Overall, I adapted and I continue to adapt every day. Being a mother is the greatest adventure I have been on. My daughter is my best friend. We have both learned how to function together and make things work. I am very proud of the woman she is becoming. I believe having a mother in a wheelchair has taught her to be more accepting. I think she has become more adaptable as well.

I am proud of myself for facing the fear of motherhood and I am proud of what she and I have accomplished together!

About Kerri Knudson: Kerri lives in Utah with her daughter. She uses a 4Front® 2 Power Wheelchair and loves exploring the outdoors. Click here to learn more about Kerri.

For more great blogs from our brand ambassadors and Q Roll Models, visit lifeatilevel.com today!

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Andraéa LaVant is Shaping the World

Although freedom means many things to Andraéa LaVant, one definition recently became a reality to her.

My power wheelchair that I’d had for over seven years began to malfunction,” Andraéa said. “I’d grown accustomed to the independence that the push of a button could bring.”

Andraéa resides in Tempe, Arizona. She has with spinal muscular atrophy, requiring a mobility device for daily living activities. Without her power chair, Andraéa couldn’t go places, complete MRADLs or even work the same hours.

“I spent many days working from the side of my bed and foregoing activities that made my life so rich,” Andraéa said.

Enter the 4Front® 2 Power Chair! Andraéa loves the maximum speeds of 6.25 mph, as well as the backup camera and her Raspberry Beret and White Satin color combination.  She also loves the safe seat elevation on her wheelchair, which allows her to elevate 10 inches for activities such as cooking or transferring. 

“My wheelchair is my means for independence,” Andraéa said. “I use a wheelchair full-time, so it’s what enables me to work, travel, spend time with friends and family, and everything in between.”

The Netflix Documentary “Crip Camp”

Andraéa’s busy career keeps her on the go! She worked as an impact producer on the Netflix documentary, “Crip Camp.” She and her team produced campaigns that maximized the reach and impact of the film. And what an impact it made!

“Crip Camp,” which was executive produced by Barack and Michelle Obama, follows the story of a group of teenagers who attended Camp Jened in the 1970s. Located in the Catskills in New York, Camp Jened was a utopia, offering individuals a place where they could experience liberation and full inclusion. This groundbreaking camp impacted lives so much that a group of alumni joined the radical disability rights movement to advocate for historic legislation changes. The film demonstrates that inspirations during youth can lead to world-changing results.

“Crip Camp” was nominated for an Oscar in 2021 for Best Documentary Feature.  Although the film did not win an Oscar, it’s still a win for the disability community. Andraéa is proud of her team and the role they played in leading the “Crip Camp” impact campaign. She celebrated many achievements that night, including becoming the first visibly disabled black woman on the red carpet.

Working as a Disability Consultant

In addition to her work in making “Crip Camp” a success, Andraéa is passionate about cultivating community cultures that are inclusive of disabled people. She is the founder of LaVant Consulting, a company that shapes the way the world reaches, views and values disabled people. In her role as an inclusion specialist, Andraéa works on programs that support youth and adults with disabilities and other underserved populations, including black, indigenous and people of color (BIPOC).

“I am inspired by my peers within our community that continue to fight daily to ensure disabled BIPOC folks are at the center of every movement and conversation,” Andraéa said.

Testimonials

Christian Budney is Ready and Excited for Adventure

For Scranton, PA, native Christian Budney, making connections and helping others is a true passion of his.

“If I can help other people, I am happy!” Christian said.

Christian has faced many challenges in his life, all with a kind heart and a positive attitude. In March 2006, at just 17 years old, Christian broke his C5 vertebrae in a snowboarding accident. Paralyzed from the chest down, his life drastically changed. Still, Christian didn’t let his accident keep him from achieving his goals. He obtained both his bachelor’s and master’s degrees in social work. Today, he works full-time and lives life on his terms.

Getting Outdoors with his 4Front 2 Power Wheelchair

Because of his active lifestyle, Christian uses the 4Front® 2 Power Chair for mobility.

“It has amazing suspension and power,” Christian said. “I love spending time outdoors and I never need to worry about hitting bumps or wheeling through any kind of terrain.”

While he loves the suspension, his favorite feature on the 4Front 2 Power Chair is the power adjustable safe seat elevation. Christian elevates his power wheelchair when performing transfers from his wheelchair to his bed. Safe seat elevation has also made household tasks like cooking much easier. The social benefits are significant too.

“Whether I am chatting with coworkers or spending time with my friends and family, being at the same level as them is both empowering and life changing,” Christian said.

Making a Difference

In his role as a school social worker, Christian enjoys helping others and connecting with his students.

“The students that I work with inspire me and I hope that I can inspire them,” Christian said.

Outside of work, Christian is involved with a local chapter of the United Spinal Association. He tries to attend “Roll on Capitol Hill” every year, which is an annual policy event that supports key advocacy priorities for people with disabilities. As Christian looks toward the future, he and his girlfriend are excited to attend several concerts, including the Red Hot Chili Peppers. They are also flying to Hawaii in a few months.

“While it can be a little scary to travel as a wheelchair user, the destination always makes it worth it!” Christian said.

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Helpful Snow Cleanup Tips for Wheelchair Users

It’s February in New York. If you live anywhere in the northeast, you know that February usually brings a lot of snow. For me, snow is not my friend. It means I have to stay inside because of the cold. Plus, when all that white stuff covers the ground, it can be very challenging to go out and do anything.

How I Clear Snow in My Power Wheelchair

Usually when the snow falls, I have my cousin or friend come over and they plow my driveway out for me. If it’s just an inch or two of snow, I don’t mind taking my power wheelchair and clearing the walkway. Now, obviously I cannot lift up heavy snow and throw it into a big pile. I can, however, take my shovel and put it in front of my wheelchair casters and use my chair as if I had a plow on the front. This way, I can push the snow to make a clear path. This does not work well with ice. When I do this, I usually just clear the pathway out front of the house to the mailbox so I can get my mail. I also like having a clear path in case of an emergency so I can get out.

Josh clears snow in his power wheelchair

Staying Safe When Clearing Snow

I always make sure to have a family member or a friend around when I’m pushing snow. That way, if I get stuck due to snow buildup or any kind of slick surface like ice, there is someone to help me. If the snow is too wet or icy, there is nothing I can do except throw some salt down or have my friend or cousin clear the path. If it’s just a light dusting or the snow is powder, I don’t mind using my power wheelchair to clear my driveway.

One of the realities of being a power wheelchair user in the Northeast is when it does snow heavily, you need somebody to plow you out. I’m very thankful that I have a good friend and cousin that plow me out. Make sure that you save some extra cash for this, because during the winter, you’ll likely need to pay somebody to plow your driveway.

About Josh McDermott: Josh is a brand ambassador for Quantum Rehab®. He is a public speaker and has served as a goodwill ambassador for the Muscular Dystrophy Association. Josh lives in New York and loves to travel. Click here to learn more about Josh.

For more great blogs from our brand ambassadors and Q Roll Models, visit lifeatilevel.com today!

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Supporting Young Leaders in Arizona

In early March, I had the honor of flying to Phoenix, Arizona, to support young leaders with disabilities as they were honored by Rep. Jennifer Longdon of the Arizona House of Representatives. 

I am the executive director of Disability EmpowHer Network, a national nonprofit that connects, motivates, and guides disabled girls and women to grow, learn, and develop to their highest potential and have the confidence to lead. While we work to help all women and girls with disabilities, we emphasize our programs that help young disabled women. Two of the girls in our programs, Maddie and Kailani, are both from Phoenix, Arizona. You may recognize Maddie because she is also a Q Roll Model and she has blogged about her experience in our programs!  

A Day at the Arizona House of Representatives

Thanks to a board member, Disability EmpowHer Network coordinated with Rep. Longdon, who is also a proud disabled woman. Maddie and Kailani joined her on the floor of the House of Representatives to say the Pledge of Allegiance in English and ASL before Rep. Longdon made a proclamation about women with disabilities. Afterwards, Rep. Longdon presented Maddie and Kailani with a copy of the proclamation, along with the flags that were flown over the Arizona Capitol yesterday and member pins!

Support from EmpowHER Camp Mentors

I wasn’t the only person who traveled to Phoenix to support these young leaders though! Kelly Timmons from our partner organization, Kelly’s Kitchen, is Maddie’s mentor from EmpowHer Camp for the year. So, of course Kelly was there! On top of that, two more EmpowHer Camp mentors, Alexis Treichel and Jenny Border, came out to show their love and support!

After giving Rep. Longdon a big Disability EmpowHer Network hug goodbye, we headed over to see our friends at Ability360 where we got a grand tour! It was a fun and busy day for all of us and we’re so proud of our young leaders! At Disability EmpowHer Network, we know that when disabled girls lead, we all succeed. Maddie and Kailani are shining examples!

About Stephanie Woodward: Stephanie is a brand ambassador advisor for Quantum Rehab® and works as a disability rights activist. She has received many awards for helping communities become more accessible, as well as for her actions in fighting for the rights of disabled individuals as it relates to Medicaid and other support services. Click here to learn more about Stephanie.

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How to Talk to Your Kids About Disability

After my diagnosis, family and friends often asked me when I will have a conversation with my children about my disability. I realized there was no perfect timing. I tried to figure out how to make such a complex subject easy for a kid to understand.  At the onset of my disability, I decided to make sure my kids saw a mother with a positive outlook on life. Although I use my Edge® 3 Power Wheelchair with iLevel® for every part of my life, I always allowed my children to see my gratefulness and my humbleness as a working mom and wife in a wheelchair.

If I am angry, sad, or more than a little aggravated, I quickly reset. Sometimes, I am forgetful and after some time, lethargy and tiredness set in. In dealing daily with an autoimmune disease, intense negative emotion or a prolonged bad mood could easily trigger a flareup. This could last anywhere from days to weeks. By resetting, I remember that I am here for a purpose.

Here are a few tips to help your kids empathize and understand how everyone in this world is different but special.

Let Them Know You Are Here for Them

I had to explain to my children that life happens and sometimes things are out of control. My son and daughter remembered a mother that was active in Girl Scouts, but they were too scared to ask me what the future holds. I reminded them that I am still here to support them and that it would just look a little different.

Avoid a Long Conversation

I didn’t sit down and have a long conversation about disabilities, modern medicine and what my recovery or lack of recovery would look like. Instead, we slow walked it.

Let Them Know They Can Talk to You

The best advice I can give to a newly disabled parent is to let your kids know you are approachable and they can talk to you anytime. Sometimes, a conversation happens right out of the blue while we are Walmart or even at the park. I simply smile and advised them to let me know what is on their mind.

Disability Can Change How They See the World

Children are like sponges. They are waiting to absorb all we must share. As a result of me being disabled, my daughter now wants to be a nurse. Just think: if I wasn’t disabled, would she have the same heart to understand the struggles of so many men, women, and other children?  

My motto now is to live, love and laugh.  This autoimmune disease doesn’t define how I live; I do! I work hard, love hard, and laugh hard. I explained to so many others that being disabled has taught me how fragile life is and how having my chair is truly an extension of my body. I often laugh that I forget I am disabled when I am in my power wheelchair because my independence is always at its peak. Life at iLevel is great but life about ground level is spectacular!

About Merlisha Henderson: Merlisha uses an Edge 3 Power Wheelchair for mobility and lives in Arizona with her family. As a wife, mother and disability advocate in her community, she stays active and independent, working toward bringing equality and access to all. Click here to learn more about Merlisha.

For more great blogs from our brand ambassadors and Q Roll Models, visit lifeatilevel.com today!

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My Amazing Experience Touring the Hall of Presidents

Walt Disney World is so much more than theme parks with rides and roller coasters. Disney offers picturesque scenery, grand parades, phenomenal eats and numerous educational opportunities. Yes, that’s right, there are countless educational opportunities at Disney. Have you ever imagined being in the presence of all 45 U.S. presidents? Do you have questions about the formation of our Constitution? Do you wonder what it would have been like to watch Abraham Lincoln deliver his Gettysburg address? Have you ever wanted to see authentic presidential artifacts dating back to George Washington? If you answered yes to any of those questions, then The Hall of Presidents is one Walt Disney World attraction that you don’t want to miss.

What is The Hall of Presidents?

Bliss in her Stretto Motorized Wheelchair

Walt Disney dreamed of an attraction where every president would come to life before your eyes. The originally animated wax figures that were conceived weren’t life-like enough for Walt. Then, Disney Imagineers were challenged to develop the first audio-animatronics figures in human form. These startlingly realistic audio-animatronics replicas have been running in The Hall of Presidents since opening day in 1971.

For over 50 years, this attraction has been updated every 4 to 8 years with the newest presidential addition. It is nestled behind Cinderella’s Castle in Liberty Square at Magic Kingdom. The Hall of Presidents was designed to be a replica of Independence Hall in Philadelphia. There is a sign outside the building with the year 1787, which refers to the date the Constitution was signed.

Artifacts You’ll See in the Museum

The Hall of Presidents is recognized as a federal presidential museum because of all the historic artifacts in the lobby of this beautiful theater. You can find dresses of former First Ladies, boots, beer mugs, presidential chinaware, golf clubs, and other authentic artifacts dating back to the 1700s.

The Great Seal of the U.S.

Bliss, elevated in her motorized wheelchair

Another impressive item located in the lobby is the Great Seal of the United States. It required an act of Congress for The Hall of Presidents to use the Great Seal. The only other place this Great Seal can be seen is in the White House. When you finish browsing the impressive lobby, you are ushered into a 700-seat theater to view a 25-minute film that covers the dramatic story of our nation’s founding, the origins of the Constitution, and the presidency. When the film ends, the stage reveals lifelike audio-animatronics versions of 45 U.S. presidents. Each figure moves, nodding their head or gesturing in some way, as their names are called. If you are wondering why there are 45 and not 46 figures onstage, it’s because Grover Cleveland served two non-consecutive terms as both the 22nd and 24th president.

As you can see, The Hall of Presidents is a must-do attraction at Walt Disney World. Be sure to check it out on your next visit to the Magic Kingdom.

About Bliss Welch: Bliss is a Quantum® brand ambassador and Ms. Wheelchair Tennessee 2013. Bliss is actively involved in the disability community. She uses a motorized wheelchair for mobility and enjoys traveling and spending time with her daughter. Click here to learn more about Bliss.

For more great blogs from our brand ambassadors and Q Roll Models, visit lifeatilevel.com today!

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The Importance of Power Adjustable Seat Height (PASH)

When I was 12 years old, I started going to the mall with my friends. My dad noticed that I just couldn’t keep up with the other girls. My dad suggested I get a power wheelchair and I fought him on it. I told him I didn’t want to use a wheelchair because people would think I’m disabled. His response was, “Well, I’ve got news for you, kid. You are disabled.” I obviously knew I was disabled but thought getting a wheelchair would somehow make people think less of me. My dad told me that what other people think shouldn’t prevent me from getting the tools I need to live the life I want to live. So, I got a power chair from Quantum Rehab. 

I’m so glad that my dad talked me into getting my power chair. Since then, I’ve had five power chairs that got me through high school, college, living in Ireland, working in Washington D.C., going to law school, litigating in Miami, starting a nonprofit, and so much more. I wouldn’t have been able to live my very active lifestyle without my power chair. It allows me to go long distances and up steep hills!

iLevel® Power Adjustable Seat Height

So, imagine my excitement a few years ago when I learned about iLevel®. iLevel is a power adjusted seat height system (PASH) that allows wheelchair users to access more of the world through height! Think about it. Legs don’t just provide people the ability to move back and forth. They also help to go up and down.  When you sit, you’re at a lower height than when you stand. You’re able to reach more because of your ability to use your legs. 

Wheelchair users often cannot use their legs to get more height. PASH allows wheelchair users to finally access areas that most people access regularly, such as higher shelves in the fridge or pantry and the stovetop. I think it’s really important that society understands the importance of being able to reach.

Could You Do These Tasks?

I want you to think about this for a minute. Think about all the things you do every day. Now, think about how you would do those tasks while sitting and not being able to reach. Think about whether you could make a simple pasta dish right now if you were sitting.  Could you reach your stovetop? Could you fill a pot of water and bring it to your stove? Could you reach the knobs to turn on the burner? Could you reach the box of pasta from the cupboard you keep it in? Could you reach the jar of sauce? Could you comfortably see if the pot of water was boiling and pour pasta into the boiling water? Could you stir? Could you reach the bowls to put the pasta in when it’s done cooking? Could you safely lift the pot of boiling water off the stovetop and bring it to the sink and strain the pasta? Could you reach over the hot stovetop to turn the knob to shut off the burner? Could you do all these things while sitting? Could you do it without worrying about getting burned or breaking something? I can’t. Not without my iLevel.

Insurance Coverage of PASH

Right now, most insurance companies will not cover PASH technology because they do not think that it’s “necessary.” I literally cannot make spaghetti without my iLevel, much less do anything that requires reaching the upper 2/3 of my house. Yet, insurance companies don’t think it’s necessary. Because insurance companies don’t think it’s necessary, disabled people across the country are being prevented from accessing the tools they need to live the lives they want to live. 

I believe PASH is necessary and wheelchair users should have access to this technology. I am proud to work with Quantum on a policy level to try to change this. And that’s why I post so many pictures of me living my life in my PASH wheelchair and encourage other people to do the same. 

The Importance of Change

You see, policy change usually doesn’t happen unless there’s societal change. When society sees the issue and understands it, there is a better chance that policy will change.  And when the policy changes, wheelchair users across the nation will benefit and FINALLY be able to reach the things that most people can reach (and take for granted), hundreds of times a day.

About Stephanie Woodward: Stephanie is a brand ambassador advisor for Quantum Rehab® and works as a disability rights activist. She has received many awards for helping communities become more accessible, as well as for her actions in fighting for the rights of disabled individuals as it relates to Medicaid and other support services. Click here to learn more about Stephanie.

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What I Love Most About My Stretto Wheelchair

My Stretto is my first power wheelchair. When I sat down with my representative to customize my wheelchair…woah! There are A LOT more choices compared to making selections for a manual wheelchair! As is usually my go-to when I’m entering uncharted disability-related waters, I checked with friends and colleagues in our disability community to ask their opinion about what worked and what didn’t. Choices like these, of course, are highly individualized and personal but it helped me to hear different perspectives. These are three components/accessories I’m glad I chose for my power wheelchair.

Actuator Controls for Tilt, Recline, Footrests and iLevel

The actuator controls for my tilt, recline, iLevel, and footrest have been helpful to get different seating configurations just right, and quickly. I wasn’t sure I needed another set of buttons if I could technically change these controls with my joystick. The buttons are a much easier and smoother way for me to adjust seating. I don’t have to look at the screen and can adjust two modes at once.

My Quantum Glovebox

The Quantum glovebox is the perfect size for my phone, wallet, sanitizer, mask and whatever else I need on the go. I haven’t carried a purse in a few years because nothing seems to work quite right. For me, it’s either a wallet and phone or all-out backpack. The glove box has been a must-have to keep my lap and hands free, while still having what I need within reach.

A Headrest for My Power Wheelchair

A headrest might seem obvious to some, but I’ve never had one on any of my wheelchairs previously. In fact, I’ve preferred very low backs so I wasn’t sure how it would feel to have a full back AND a headrest. Also, I’ll admit I felt conflicted about how a headrest looked in a superficial sense. Our chairs are an extension of us. I don’t think there’s anything wrong with wanting and designing a beautiful, powerful wheelchair that represents you. In this case, I realized that I was overlooking the benefits (actually having support for my head when I tilt back!), in exchange for this mythical minimized wheelchair aesthetic. I’m appreciative for the extra support for my neck and back. I’m filing that previous sentence under “Things my 16-year-old self never thought she’d say.”

Make The Choice That’s Right for You

I’m about two months into life as a Stretto user and continue to learn more each day. The backup camera also makes my list of favorite accessories, but I’d like to dedicate a little more detail to my thoughts on its uses in the future. Making choices about your next wheelchair can feel overwhelming. We know there are no “do overs” and it’s often unknown when we’ll be eligible for our next wheelchair. With all that in mind, let’s push back on our resistance to any support, wheelchair accessory or otherwise, that could be helpful but doesn’t fit an aesthetic. All bodies and all wheelchairs are beautiful.

About Kara Ayers: Kara is a mother of three and lives in Ohio. She is an associate professor at Cincinnati Children’s Hospital and Medical Center. In 2021, Kara spoke to the Biden-Harris COVID-19 Equity Taskforce about the need for people with disabilities to access the COVID-19 vaccine. Click here to learn more about Kara.

For more great blogs from our brand ambassadors and Q Roll Models, visit lifeatilevel.com today!

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How to Host Parties and Celebrations During a Pandemic

It’s been 2 years since the pandemic began. We’re still adjusting for ways to be safe and have fun. Once I realized that COVID-19 wasn’t going away any time soon, I started to get creative. Here are some ideas of how you can show your family and friends how much you care about them on birthdays, graduations, anniversaries and baby showers. 

Birthday Celebrations

If you are a friend of mine, you may have seen me decorating your yard with giant size decorations, balloons and streamers. This never would have been possible without iLevel. I can elevate my Quantum Power Chair up to 12 inches to help me decorate. I usually wait until sunset and then me and my power wheelchair “bumblebee” pop up at your location!  Just like a genie in a bottle, I appear to come and celebrate YOU.  

Decorative Wreaths and Virtual Parties

For the holidays, I created special wreaths for Superbowl events, Valentine’s Day, Thanksgiving and Christmas. If you had a vision, I could deliver it with the help of iLevel. As time went on, I orchestrated Zoom and Microsoft Team calls and hosted virtual parties for all occasions. I think the best parties were those without a holiday attached. We just came together to have fun.

Virtual Fashion Shows

Recently, a friend reached out to me upset that her venue for her fashion show had been shut down due to COVID-19. I created online invites and put together an itinerary fit for a king and queen. As the MC for the event, I dressed in a ballgown, and elevated my power wheelchair at iLevel, showing everyone how to model their outfits on Zoom. I worked the runway elevated 12 inches by maneuvering my wheelchair as if I was on an actual runway in Milan. Plus, I had an online DJ to hype the guests up and keep everyone engaged. Meals were delivered to all guests, courtesy of Uber Eats and Door Dash. In addition to the meal, everyone received a gift basket with international chocolates, professional manicure kits and an Eiffel Tower Snow Globe. After two hours of modeling, laughing, and discussing how we plan to do it again in 2022, everyone can tell you that a Zoom fashion show is the best idea!

Movies and Snacks in the Backyard

If you are not fond of doing virtual events, you can still have fun by traveling to limited places. I have planned “evening strolls to nowhere.” Sometimes, the kiddos and I go out in the neighborhood to pick fruit, check out walking trails and order dessert to go. We return home and go into the yard to watch a movie on a projector screen while eating the best snacks ever. The pandemic has taught me that everyone can stretch their imagination and think outside the box. I have learned that with a little creativity and some improvising, I can pull off most events by myself with iLevel technology.

Celebrating Anniversaries

When it came to my husband and our anniversary, I created a playlist of our favorite songs and hired a caterer to deliver the food. I set up a scavenger hunt in the house and outside in the neighborhood. I challenged him to find 10 gifts that had special meaning and represented the years we have been a couple.

We’re not stopping there. The show must go on. To show some love to other wheelchair users, I sent an invite to about 30 of my friends that are all wheelchair users for a gathering. We’re going to “pimp our ride” and decorate our wheelchairs in a little friendly competition with a theme chosen by each wheelchair user. I can’t wait to pull this event off in the Spring. More to come, so stay tuned!

About Merlisha Henderson: Merlisha uses an Edge 3 Power Wheelchair for mobility and lives in Arizona with her family. As a wife, mother and disability advocate in her community, she stays active and independent, working toward bringing equality and access to all. Click here to learn more about Merlisha.

For more great blogs from our brand ambassadors and Q Roll Models, visit lifeatilevel.com today!

Return to the Life At iLevel page