How To Get Involved In and Support Disability Organizations

How to Get Involved In and Support Disability Organizations

It’s probably safe to say most people in the “disability world,” genuinely want to help others. It makes us feel good and it makes others feel good, so it’s pretty much a win-win.

And when you consider the daily challenges specific to people with disabilities, like having to call ahead to ensure a restaurant is accessible, it makes sense the community is full of empathetic people who are willing to help others out.

We’ve all been through challenges. We all know what it’s like.

But helping others isn’t always easy. You might not have a lot of time; you might not have a lot of money; and you might not have either.

The good news is those constraints doesn’t matter much. You don’t have to have a lot of anything to help others. If you want to learn how to get involved in disability organizations or support disability organizations without a surplus of time or money, then skip ahead to this section.

But if you’re able to do a bit more, check out these tips we received from Vantage Mobility’s accounts payable specialist, Christina Fisher, who was born with Charcot-Marie-Tooth Disease,but wasn’t diagnosed until her mid-forties.

She’s been with the company for more than 10 years and is heavily involved with the Muscular Dystrophy Association, and Charcot Marie Tooth Association. This year, she will take up the title of Co-Leader of the Arizona CMTA Branch.

First, understand why disability organizations are important.

Disability organizations can help you better understand your diagnosis. In some cases, they can also help you determine your diagnosis. Many organizations host seminars where experts in the field present new information or research for members to learn about. This info can help you prepare new questions to ask your physician.

If you read our recent post on How to Get the Job for People with Disabilities, then you already know disability organizations are great resources for job hunting. Many organizations provide résumé feedback, practice interview tutoring and help you network with industry professionals.

Perhaps the most important of all, disability organizations help you find support groups. Fisher says having a strong community of people going through similar circumstances has been helpful for her emotionally. Support groups can be found separated based on age, diagnosis, location and more. No matter what your disability, there’s a support group out there for you.

Speak with your physician if you’ve recently been or are in the process of being diagnosed.

If you’ve just received a diagnosis, ask your physician for organizations he or she recommends. They should have a plethora of resources, and even if it’s a large organization, someone within that board can connect you with a more specialized group. After Fisher was diagnosed, she turned to the Muscular Dystrophy Association for help. There she connected with people who introduced her to the CMT Association.

Research organizations online.

If your physician gave you multiple organizations, or if you don’t have a disability but still want to get involved, then try online research. Using a search engine to find organizations based on your interests will be plenty useful.

Start connecting.

Most organizations will have a page on their website answering how to get involved. Once you have an organization that you’re passionate about, search their site, and if you can’t find anything on volunteer information, then find an FAQ page or “Contact” page, and send someone on the list an email — preferably a volunteer coordinator.
Afterward, start connecting with them through social media channels like Facebook, Twitter, LinkedIn and maybe even Instagram. Comment on pictures or send messages asking how to get involved.

Volunteer, fundraise and be proactive.

Many organizations host children’s camps, races, carwashes, seminars, weekly meetings and more that take weeks—and sometimes months or years—to prepare for. Find out what your organization’s big event is, and think about what skills you possess that could be helpful in planning or executing that event. Then reach out and volunteer your services. If you’re into fundraising and want to learn to do it like a pro, then skip to that section here.

If you’re looking to excel in an organization, then you have to be proactive. Don’t wait for people to ask favors of you. Fisher says she attended weekly meetings with the CMTA for nearly three years before moving up to co-leader of the branch. She missed a few meetings here and there, but she made up for it by doing at-home research and bringing in helpful information for new members as much as she could, some of which included other support groups to check out, other websites to read from, and more.

How to Support Disability Organizations Without a lot of Money

Attend events, provide high quality feedback to disability organizations.

If you can’t help plan or execute the event, then try to simply attend the event. Nothing is worse for an organization than a well-planned event that no one shows up for. Help them out by being present, informing yourself about the subject at hand and spreading the information whenever and wherever possible in the future.

After attending, send a letter or call in to let them know how it went. Make your feedback useful by telling them what went really well that they shouldn’t change and what didn’t go well that they should definitely change. Though Fisher is heavily involved with MDA, she is not an official volunteer or board member. She attends their annual walk and raises as much money for them as she can. After her third straight year of attendance, she called in to ask how she could provide feedback, and the organization actually sent a representative to visit her and her fundraising team to take notes.

As you’ll soon see, organizations desperately want high quality feedback!

Tips to fundraise like a pro.

Fisher has attended the MDA walk three years in a row and raised more money for the organization each year. This past year, she almost doubled her $7,000 goal by raising a little more than $13,000.

Her favorite tips are:

  • When you find someone who donates one year, document his or her contact info and ask again the following year.
  • If someone can’t afford to donate, then don’t push. Instead, offer the person information on the cause, and ask him or her to pass it along whenever possible. You never know how knowledge might help someone else down the road.
  • Ask for donations from people who have connections to the disability or other disabilities. They might be more understanding, and you can agree to support their cause in return. This will create a respectful and long lasting relationship.
  • When sending an initial email or posting to social media, include the following:

  • The mission and goal of the fundraiser
  • How you are personally connected to the fundraiser
  • How the fundraiser has made a difference in the past.
  • How to Support Disability Organizations Without a lot of Time

    Donate.

    A simple and quick way to make a positive difference is by donating to organizations that work to better the lives of people in need, but it’s important to know exactly where your money is going inside the organization and how it will make a difference. Use the online resource Charity Navigator to understand how well a charitable organization uses its resources and upholds its programs through a documented, unbiased rating system.

    Bonus Note: September is CMT Awareness Month! (Charcot-Marie-Tooth Disease) If you’re looking to get involved in a disability organization immediately, this organization might be the one for you. Click the link above to find out how to get involved.

    Lexington Resident John Rose, Winner in National Contest, to be Awarded the Keys to a Wheelchair Accessible Vehicle

    Laura and John Rose given keys to New Wheelchair Accessible Vehicle

    On Thursday, July 28, 2016 John Rose, retired choir teacher and Lexington, Kentucky resident was awarded a wheelchair accessible vehicle as a Local Heroes Contest winner in the senior category for National Mobility Awareness Month. American Honda Motor Co., Inc., the National Mobility Equipment Dealers Association (NMEDA) and Vantage Mobility International (VMI) are the sponsors of the giveaway of a 2016 Honda Odyssey Touring Elite wheelchair accessible vehicle. Rose who won the customized minivan with a (VMI) in-floor conversion, is afflicted with ALS and retired after a 39-year career as a high school choir teacher in Miami, Florida. Admired and respected by students, Rose started the non-profit “Where Every Child is a Star” that provides summer camp and educational experiences. Now with his wife Laura, Rose is living near family members in Kentucky. The wheelchair accessible vehicle will allow him to attend concerts and continue to be a part of the arts community. Laura is John’s caregiver and also now has a challenge of her own; she is in need of a kidney donor. Interesting fact – Lexington, Kentucky also had a national contest winner back in 2013 – Abigail Carter, who now lives in Florida. The National Mobility Awareness Month Local Hero Contest received 928 entries, and 1.1 million votes were cast to help select a winner.

    About National Mobility Awareness Month

    National Mobility Awareness Month is the annual May celebration that encourages seniors, veterans, caregivers and people with disabilities to enjoy active, mobile lifestyles. Founded in 1989 as a not-for-profit trade association, the National Mobility Equipment Dealers Association (NMEDA) supports the awareness month with the assistance of approximately 600 mobility equipment dealers, manufacturers and driver rehabilitation specialists located in the United States and Canada dedicated to expanding opportunities for people with disabilities. For updates, please visit MobilityAwarenessMonth.com, as well as Facebook, Twitter (@NMEDAcom) and Pinterest.

    News Links

    http://www.wkyt.com/content/news/Lexington-man-with-ALS-wins-national-contest-given-wheelchair-accessible-van-388590152.html
    http://www.wtvq.com/2016/07/28/lexington-man-als-wins-national-contest-new-van/
    http://www.lex18.com/story/32566621/area-couple-wins-national-contest

    Get Dressed with Adaptive Clothing to be fashionable

    How to Dress to Impress with Adaptive Clothing

    What is adaptive clothing, and why is it important?

    Adaptive clothing is a form of assistive technology, like canes for walking or glasses for seeing, made specifically for people with disabilities. There are certain distinctions in adaptive clothing that make getting dressed easier for people with disabilities. The options are geared toward specific disabilities or ailments, such as magnetic buttons and slip-on tennis shoes for people with arthritis or Parkinson’s.

    Stephanie Thomas, a disability fashion stylist and founder of Cur8able.com, says disability-friendly clothing is often times more comfortable and in some cases, safer to wear. She also says it gives people with disabilities the independence and freedom to dress themselves according to their own personal style.

    But consider this:

    While most able-bodied people can head into a store at the mall and find something they like, many people in wheelchairs cannot. Sometimes it’s because of the difficulty in wheeling around small shops or weaving in between people. But perhaps the most prominent reason is there simply aren’t accessible clothing options for people with seated body types.

    Think about it:

    When was the last time you saw a rack of clothes designed for people in wheelchairs? And though this article features several disability clothing brands, many of which can only be accessed online, Thomas emphasizes that people with disabilities need so many more options.

    Of the available adaptive clothing companies out there, Thomas says there are still many styles not reflected, like grunge, preppy and more.

    Now what we need to realize is this:

    If able bodies can choose any style to express themselves, why can’t people with disabilities? To learn how to advocate for more disability clothing options and to learn how to make the most of your personal style right now, check out the following tips.

    5 Steps to Dressing Stylishly for People with Disabilities

    Invest in adaptive clothing, and here’s why:

    • Whereas regular trousers might rise near the ankle or the waistline might be pulled down and expose one’s backside upon sitting, adaptive pants are specifically made to combat those issues.
    • Adaptive tops with three-quarter or full-length sleeves have extra material near the elbow, making it more comfortable to set arms on wheelchair armrests.
    • Adaptive clothing is usually made with softer, sweat resistant fabric that is more gentle on skin and helps avoid skin sores.
    • Adaptive clothing provides more accessible fastening options: be it zippers in easier-to-reach areas, magnetic buttons, or elastic materials to avoid fasteners all together, disability-friendly clothing makes getting dressed less of a hassle. That means you can focus on what really matters: looking good and feeling good!
    • Just remember, like a nice suit for work or a dress for a formal event, adaptive clothing should be considered an investment purchase. This is apparel that caters to your exact body type and will most likely be more expensive than non-adaptive clothes.

    Befriend a tailor

    • Especially for people who are temporarily disabled or not in a place to invest in adaptive clothing, tailors can make great alternatives. Ask a tailor to examine your nice pieces of clothing and see if he or she can let out some of the hems to provide more comfort room in the creases of your body, like your waist, knees, elbows, etc.

    Understand your body shape to choose the most flattering clothes

    • Want to look taller? Thomas says wearing deep-cut shirts will elongate the line from chin to chest and make your upper body appear longer.  
    • Have narrow shoulders? Thomas says halters are an extremely flattering option.
    • Have thick, muscular arms? Sometimes spaghetti straps can make this shape arm appear overpowering. Instead, try tank tops with thick straps. Thomas says this option can help balance the body.

    Look for adaptive qualities in non-adaptive clothing

    • Lowered pockets or pockets with zippers: For people in wheelchairs, pockets are often useless because the content will pour out the sides and onto the wheelchair. Find zippered pockets or pockets near the calf area to avoid this.
    • Avoid double seams or thick, itchy materials: Fabric like this is more likely to cut into or irritate the skin. This can later lead to skin sores and serious infections.
    • Wicking material: Like athletic wear, clothes with wicking materials are sweat resistant and will help prevent skin sores.  
    • Minimal rivets: Those metal pieces, often used in denim or as decorative material, can dig into skin and cause skin sores and irritation.
    • Conveniently placed buttons and zippers: The convenience of a button or zipper is dependent on the person with the disability. Consider what’s best for you when shopping.

    Wear what makes you feel good

    • Always choose outfits that make you feel confident. If a friend loves a certain outfit on you but you don’t, ditch it! You’re the one wearing it; your opinion matters the most.

    *Bonus Tip: Putting outfits together in a way that looks good and makes you feel confident is sometimes harder than it sounds. Men or women who struggle to curate a stylish wardrobe should consider hiring a personal stylist, like Thomas, to help them get started. Sometimes it just takes a peer’s help and advice to get the fashion ball rolling.

    Disability-Friendly Apparel for People with Disabilities
    via cur8able.com

    1. Tommy Hilfiger’s Runway of Dreams Line ( a kids collection)
    2. Nike (HyperAdapt 1.0 shoe available holiday season 2016)
    3. ABL Denim
    4. Able 2 Wear
    5. Ag apparel
    6. Brt Adaptive
    7. Chairmelotte
    8. Disabled Gear
    9. Downs Designs
    10. Endless Abilities Jeans
    11. IZ Adaptive
    12. Kathy D Woods
    13. Koolway Sports
    14. LegaWear
    15. Liz & Ett
    16. MagnaReady
    17. Rackety’s
    18. Rolling Elephants
    19. Rolli Moden
    20. Rollitex
    21. Rollin’ Wear
    22. Ross Daniel Adaptive Apparel
    23. Simple Closures
    24. Shoes of Prey
    25. USA Jeans
    26. WheelieChix-Chic

    *Check out Cur8able.com for discount codes to some of the above-mentioned brands.

    How to Advocate for more Disability-Friendly Fashion Options

    Social media

    • Use Twitter, Instagram, Facebook and even Snapchat to reach out directly to your favorite companies and ask for more adaptive clothing options.

    Send an email to customer service

    • Not a social media person? Search the company’s website and contact them via email or online forum. Remember, Thomas says, “Your money is green.” You have buying power, and because of that, companies should want to serve you. You just have to let them know you’re there.  

    Be consistent; start a coalition of like minded friends

    • Chances are, you’re going to feel like a needle in a haystack reaching out to giant clothing companies if you’re alone. Don’t let that discourage you. Find a group of like-minded individuals and make plans to send dozens of messages to these companies. The more people asking for change, the more likely it is to occur.

     

    How to Clean a Power Chair and Wheelchair

    How To Clean A Wheelchair or Power Chair

    Before learning how to clean a wheelchair or power chair with this guide, it’s important to read the manufacturer’s maintenance instructions for specific cleaning rules and any methods or materials to avoid. The following instructions are generally applicable to every chair and will help achieve the best results.

    You’ll Need:

    • Disinfectant Spray (like Lysol)
    • All–Purpose Cleaning Spray (like 409)
    • Mild Dish Soap and Detergent
    • Compressed Air Can Duster
    • Microfiber Towel
    • Toothbrush
    • Cleaning Brush
    • Wire Brush
    • Vinegar

    Optional:

    • Non–abrasive Wax
    • Tire Cleaner
    • Scotchgard

    Instructions for Cleaning a Power Chair:

    1. Unplug the power chair from its power source, and disconnect the chair from its base. Most chairs will have a lever that will allow the chair to come off by pulling in an upward motion.
    2. Remove any protective cover shielding the battery. Then remove the battery from the chair to avoid damage from cleaning solutions.
    3. Use the compressed air to blow out any dust, dirt or debris in the hard–to–get–to areas near the battery region and any other crevices in the wheelchair base.
    4. Spray disinfectant to the chair base and allow it to sit for 10 minutes. Be cautious not to spray the electrical areas. After 10 minutes, wipe off the chair base with a microfiber towel to avoid scratching the paint.
    5. Spray the same area with an all–purpose cleaning spray, then wipe clean with a microfiber towel.
    6. Use a toothbrush to scrub the joystick area, as well as any extra dirty spots. Be cautious to not use too much cleaner near the electrical areas. Also use a toothbrush to scrub tire cleaner onto the wheelchair tires for an extra shine. This step is optional but is encouraged every few months.
    7. Repeat steps four through six for the battery cover.
    8. Vacuum the seat cushion thoroughly. For vinyl, hand wash it with a mild dish detergent and warm water. For leather, spray a solution of three–quarters vinegar, one–quarter water onto the surface and wipe clean with a rag. (Spray at least one foot away) For fabric, mix hot water, mild dish soap and cleaning soda. Use a rag or cleaning brush to rub the solution into the seat. Be sure to let all seat cushion types air dry before usage.
    9. Once sanitization of the base and cover is complete, spray once more with the compressed air can to remove any leftover dust particles. Re–assemble all parts, and wipe away any dampness with the microfiber towel to avoid rusting or corrosion.
    10. Optional: Apply a layer of non–abrasive wax to the power chair’s paint to achieve long–lasting and optimal shine. (This step is also great to do on wheelchair vans.)
    11. Optional: Apply a layer of Scotchgard protectant to the upholstery of the seat and back cushion to maintain fabric quality and allow for easy stain removal in the future.

     

    Instructions for Cleaning a Manual Wheelchair:

    1. Begin disassembling the wheelchair by taking off the seat and back cushions and any other fabric components of the chair.
    2. Use the compressed air to spray dirt out of the wheelchair crevices and between the wheel spokes. Hair, clumps of dirt and debris can severely impact the wheelchair’s mobility.
    3. Fill a bucket with warm water mixed with the mild dish soap. Soak the microfiber towel in the soapy water, wring the towel and gently wipe every surface of the wheelchair frame. Antibacterial cleaner can also be used, but avoid using petroleum–based cleaners or steel wool to scrub, as those materials can damage the paint.
    4. Use another towel (damp, but not completely soaked) to clean between the wheel spokes and around the wheel. If necessary, unscrew the bolts and scrub them with a wire brush to remove dirt or grease build–up.
    5. With a clean towel, completely dry the wheelchair frame, wheels and bolts to avoid rust and corrosion. Feel free to use the compressed air once more to ensure no dust is left behind.
    6. Optional: Use a tire cleaner for the chair’s wheels to increase shine.
    7. Optional: Apply a layer of non–abrasive auto wax to the frame every three months to achieve optimal shine and lasting quality.
    8. To clean the seat and back cushions, hand wash them with the mild detergent and air dry them. Unless noted by the manufacturer, avoid machine washers and dryers, as they may damage the fabric.
    9. Optional: Spray the chair cushions with Scotchgard to maintain quality and make for easy stain removal in the future.
    10. Re–assemble the wheelchair and set a routine cleaning schedule. Weekly wipe–downs are encouraged, but more in–depth cleanings should be carried out monthly or quarterly.
    15 Inspiring Quotes for Disabled People

    15 Inspiring Quotes for People with Disabilities

    (3 minute 30 second read)

    Every once in awhile, we humans start to feel down in the dumps or maybe a little complacent with our lives. It is during those moments that we have the choice to do nothing and grow even more unhappy with our situations, or work toward self–improvement and spark a positive change. One of our favorite ways to jumpstart happier and healthier lifestyles is by reading some amazing and motivating quotes from outstanding individuals. Here are 15 of our favorite inspiring quotes for people with disabilities; we think you’ll like them too.

    “Optimism is the faith that leads to achievement. Nothing can be done without hope and confidence.”   Helen Keller

    “I was slightly brain damaged at birth, and I want people like me to see that they shouldn’t let a disability get in the way. I want to raise awareness – I want to turn my disability into ability.” Susan Boyle

    “….What I learned was that these athletes were not disabled, they were super–abled. The Olympics is where heroes are made. The Paralympics is where heroes come.”  Joey Reiman

    “I choose not to place ‘DIS’, in my ability.” Robert M. Hensel

    “Life is all about balance. Since I have only one leg, I understand that well.”Sandy Fussell, Shaolin Tiger

    “Hard things are put in our way, not to stop us, but to call out our courage and strength.” Unknown

    “Abled does not mean enabled. Disabled does not mean less abled.” Khang Kijarro Nguyen

    “The measure of a man, or woman, is not so much what they have accomplished, though that has weight. It often is much more though what that man or woman has overcome to accomplish what they have.” Leif Gregersen, Through The Withering Storm

    “I do not have a disability, I have a gift! Others may see it as a disability, but I see it as a challenge. This challenge is a gift because I have to become stronger to get around it, and smarter to figure out how to use it; others should be so lucky.” Shane E. Bryan

    “Some would look at Emily’s life and think that a child born with Down’s syndrome has little hope for a meaningful life. Throw in the diagnosis of leukemia and that little hope turns into no hope whatsoever. I disagree. Emily’s life, with all its imperfections, had great meaning. Because of how many people she touched, I realize that we are far more than what we can accomplish. We are the very thumbprints of God.” Matt Patterson

    “When you focus on someone’s disability you’ll overlook their abilities, beauty and uniqueness. Once you learn to accept and love them for who they are, you subconsciously learn to love yourself unconditionally.” Yvonne Pierre, The Day My Soul Cried: A Memoir

    “Aerodynamically the bumblebee shouldn’t be able to fly, but the bumblebee doesn’t know that so it goes on flying anyway.” Mary Kay Ash

    “Disability is natural. We must stop believing that disabilities keep a person from doing something. Because that’s not true . . . Having a disability doesn’t stop me from doing anything.” Benjamin Snow, Grade 8, in his essay “Attitudes About People with Disabilities”

    “Just because a man lacks the use of his eyes doesn’t mean he lacks vision.” Stevie Wonder

    “So many of our dreams at first seem impossible, then they seem improbable, and then, when we summon the will, they soon become inevitable.” Christopher Reeve

     

    John Rose wins a wheelchair van

    Choir Teacher With ALS Wins Free Wheelchair Van

    (3 minute 30 second read)

    John Rose misses a lot about being healthy and having full body mobility. For one, he misses directing choir — before his diagnosis six year ago, he was in his 39th year of teaching high school chorus in Miami, Fl., and sat as the Director of Choirs at Florida International University. He also misses saying, “I love you,” to his friends, family and wife in his own voice.

    But the other thing he misses? Traveling comfortably in his own vehicle.

    Luckily, last month the National Mobility Equipment Dealers Association awarded John a free wheelchair-accessible vehicle in the National Mobility Awareness Month’s Local Heroes contest of more than 900 participants. American Honda Motor Co. generously donated a new Odyssey minivan and Vantage Mobility happily donated the wheelchair conversion. Soon he will be riding in safety and style next to his wife, Laura.

    John has amyotrophic lateral sclerosis, or what is more commonly known as ALS or Lou Gehrig’s Disease. ALS is a motor neuron disease where nerve cells that control muscles in the face and limbs lose strength and die.

    John cannot walk, speak or even lift his arms. He also eats through a feeding tube; but even still, Laura says he remains an optimistic and thankful man who is living a happy life. She says he never complains about the circumstances he’s been given.

    After his diagnosis, John finished his year as choir teacher. He lost the ability to conduct with his arms, but the students learned to follow his eye and mouth movements. Laura says all his students held an unrelenting respect and love for John, and many still check in to see how he’s doing. Despite his setbacks, John led them to success, and they won top–notch awards at every competition that year. Laura says at one competition a judge was brought to tears by the chemistry between John and his students.

    He also founded a non-profit organization called “Where Every Child Is a Star,” a summer camp program where children would learn all aspects of the arts. Laura says he never once let money keep kids from participating, and he used his own savings when he couldn’t find funding for the program.

    “When my wife received the phone call and told me that we were one of the three to win a disability conversion van, I was excited and extremely grateful for this opportunity,” he said via email using a computer that reads his eye movements to type. “For a second, I almost did not believe we were chosen …  Once it sunk in, I thanked God for continuing to be with us through the challenges that we face daily.”

    The new independence provided by the wheelchair van will come as a major life change, as he and Laura typically don’t leave the house except for doctor’s appointments, due to John’s deteriorated leg strength and fear of a fall.

    “Being able to stay in the wheelchair while we travel will be amazing,” he says. “No more will we have to worry about her lifting me in and out of the chair.”

    The two plan to attend church and movies and take a road–trip back to Florida to visit friends and family, as they recently moved to Lexington, Ky., for a medical operation for Laura.

    John says it’s been a delight to experience the different seasons outside of Florida, and above all, he’s thankful to God for what he’s learned in life.

    “My wife thinks I am crazy for wanting to sit and watch snow fall. It (is) also exciting to see the changing colors of leaves in fall and flowers during spring … In spite of everything, I cannot thank God enough for what he is teaching me through this.”

    wheelchair etiquette is important to people with disabilities

    Disability Etiquette: How to Respect People with Disabilities

    People who have never interacted with a person who has a mental or physical disability may think of the exchange as intimidating or nerve-wracking. They might worry what to talk about or how to avoid staring. These concerns are understandable, but it’s important to realize people with disabilities should be treated the same as everyone else.

    The most important part of interacting with someone who has a disability is seeing that person for whom he or she is, and not what disability that person has. What it boils down to is having a sense of disability awareness and disability etiquette. And to help raise awareness Vantage Mobility has created some useful tips to remember:

    1. Find commonalities before thinking about differences. Common ground is the base of all human connections; once you’ve found something in common, then you can deal with the differences. For example, a person in a wheelchair may use a wheelchair lift and hand controls to transport into a car and drive. Rather than thinking about how you and this person drive differently, focus on the commonality: both of you drive. In this instance, the difference doesn’t matter.
    2. Do not victimize people with disabilities. Referring to someone as a “spinal cord injury victim,” or “cerebral palsy victim,” takes away that person’s power. It abdicates them of their strength and ability to overcome because the emphasis is on what happened to them, as opposed to what they did about it. It would be more appropriate to refer to someone with a disability as a “survivor.” 
    3. Don’t assume they see their disability as a tragedy. Many people with disabilities have worked through the tough emotions to be happy and content with their lives. A seemingly harmless statement like, “I’m so sorry that happened to you,” or something of that nature can make a person with a disability feel sad and sorry.
    4. Adjust posture to be eye-level. The height difference between people in wheelchairs and able-bodies can create an unspoken feeling of superiority and inferiority. To be safe, sit or stand at eye-level with the person who has a disability when it is appropriate and possible. Finding a table to sit at is a great option because it can eliminate any visible differences, such as a wheelchair. Sitting in a chair (with or without a table) is also better than kneeling, which may cause the person in a wheelchair to feel like a child.
    5. Make eye contact; never avoid someone with a disability. People who fear they could do or say something unintentionally disrespectful toward a person with a disability will sometimes default to ignoring that person altogether. Never do this. People with disabilities are human, and their existence deserves acknowledgement. Any human would feel terrible being ignored; it’s never the right choice.
    6. Ask if he or she needs assistance before providing it. Don’t try to accommodate every last need of someone with a disability in attempts to be respectful. The better choice is to ask, “Is there anything I can help you with?” or, “Do you want me to get the door?” Helping before asking implies he or she is incapable and can offend the person, especially if they’ve worked hard to be able to care for themselves.
    7. Do not underestimate the abilities of someone with a disability. Many people with disabilities are capable of caring for themselves without any assistance. They’ve spent a long time adjusting to a different way of life – be it purchasing wheelchair accessible vehicles for transportation, calling ahead to make sure a restaurant is wheelchair accessible, installing tile in their homes to avoid wheelchair friction on carpet, etc. They understand what they’re capable of and what their limitations are, so don’t worry about taking care of them.
    8. Seek to understand the person and his or her disability before expecting to be understood. There may be times when you try your best to be respectful of a person with a disability and it backfires. You may be perceived incorrectly or perhaps offend someone unintentionally. Before getting angry and thinking, “They should understand I wasn’t trying to be rude,” step back from the situation and understand there could be many contributing factors to why that person got upset.
    9. Speak to the person before his or her caregiver. Someone with a distorted figure or speech impediment as a result of a physical disability is often ignored because people assume he or she has a mental disability and won’t understand. Always speak to the person with a disability before approaching the caregiver; it’s the respectful thing to do. By approaching the caregiver first, the person with the disability assumes you see him or her as unequal or incapable; it damages the relationship immediately.
    10. Be cautious of using outdated, offensive terms. Words like “handicapped” or “wheelchair bound” are not acceptable terms to use today. Many wheelchair users don’t like the word “bound” because of its negative connotation, meaning they’re tied down to the chair. Wheelchairs allow freedom and mobility. “Wheelchair accessible” is the more appropriate term to use. Handicapped is a broad and general term that many people think implies a helplessness. Disabled is more appropriate.

     

    The number one thing to remember is to treat someone with a disability how you would want to be treated. Everyone appreciates respect and etiquette, not just people with disabilities.  

    summer book reading on a beach

    Summer Reading List: 8 Great Reads for People with Disabilities

    (5 minute read)

    “Summer reading” are two words that most kids cringe at because these words take away hours — that feel like an eternity — from their precious and sacred summer vacation. Yet somehow as we age, wisdom falls upon us and we finally understand: reading isn’t a punishment; it’s a luxury. Each book is a new world to explore, and whether you plan to take a road trip cross country in your wheelchair accessible van, cozy up in the comfort of your own home, or journey down to the local coffee shop, a book will always be your noble companion. The hardest part is choosing which one to read. Sometimes, we use this excuse to put off reading altogether. No worries. We got you covered. Here are eight excellent, inspiring and uplifting reads to ensure a magical summer.

    1. Criptionary: Disability Humor & Satir by Maria Palacios ($16)
    2. If you never thought you’d laugh at a dictionary, think again. Criptionary is a comical, dictionary-format guide to the daily obstacles people with disabilities face. The compilation of politically incorrect terms and satirical definitions is meant to inspire readers to “reclaim their bodies and lives.” One amazon reviewer, Barbara Barbin, wrote, “Maria has touched on so many aspects of life including the myths people have about people with disabilities. I would recommend Criptionary to anyone who understands that there are many perspectives from which to view life and that open-mindedness is a valuable key to our existence”

    3. Thicker than Water: Essays By Adult Siblings of People with Disabilities edited by Don Meyer ($20)
    4. A person’s disability affects everyone around them; but the relationship is particularly unique for family members. This book of essays is an eye-opening read into what it’s like to be the sibling of someone with a disability. This is a great read for siblings to gain a sense of what others in similar situations are going through. “This book amazed me at how it spoke directly to me. Other adult sibs whose siblings have completely different disabilities, and we had the same situations to deal with. I am so glad to have read this book” one five-star reviewer wrote online.

    5. Laughing at My Nightmare by Shane Burcaw ($7)
    6. Laughing at My Nightmare is the 21-year-old author, Shane Burcaw’s, comedic first-person account of what it’s like to live with spinal muscular atrophy. This book has a five-star rating from 135 reviewers on Amazon as of June 2016. “His candor is startling and refreshing. His humor is fresh and infectious,” online reviewer Ben Mattlin wrote, “but in some ways this is actually a very deep and serious book.”

    7. The Speed of Dark by Elizabeth Moon ($11)
    8. This futuristic novel is set in a time period where disease has been eradicated; it’s removed at birth or infancy. Nearly everyone in Moon’s world is a beacon of health, except for protagonist Lou Arrendale, who was born before the birth cures were invented. Arrendale has adjusted to life as a high-functioning autistic individual, but he’s eventually met with the choice to partake in an experiment that could cure his autism. He’s stuck, choosing between adjusting to a new sense of self or staying as is. The Speed of Dark is rated 4.4 out of 5 stars from 270 reviewers on Amazon.

    9. Brain on Fire by Susannah Cahalan ($10)
    10. This New York Times Bestseller is a young journalist’s true account of her spiral into maddening sickness – one that occurred overnight and almost wasn’t diagnosed. Cahalan was a bright and successful 24 year old working at The New York Post as an investigative reporter when a virus entered her body and caused brain inflammation. She was labeled psychotic and schizophrenic, but her family’s persistence eventually led to finding the right doctor to discover her cure. Once healed, she had no memory of the affair and wrote Brain on Fire as her own investigation into the madness that nearly consumed her life.

    11.  When Breath Becomes Air by Paul Kalanithi ($15)
    12. This #1 Bestseller on Amazon has a five-star rating from more than 3,000 online reviews. When Breath Becomes Air is the story of author Paul Kalanithi’s journey from Stanford neurosurgeon to stage IV lung cancer patient fighting for his life. As a 36-year-old husband and father, Kalanithi challenges readers to consider what makes life worth living when mortality is so unrelentingly close. One Washington Post reviewer wrote of the novel, “An emotional investment well worth making: a moving and thoughtful memoir of family, medicine and literature. It is, despite its grim undertone, accidentally inspiring.”

    13. No Pity: People with Disabilities Forging a New Civil Rights Movement by Joseph P. Shapiro ($15)
    14. For the activists within the disability community, No Pity recounts the 1992 passing of the Americans with Disabilities Act. Shapiro discusses the progress already made and yet to be made by speaking with several Americans who have disabilities. “Mr. Shapiro, as a non-disabled person, wrote a book that was compassionate but strived hard to see things from our point of view,” one Amazon reviewer wrote. “He even taught me things I didn’t know about other disabilities.”

    15. Moving Violations by John Hockenberry ($10)

    John Hockenberry is a well–known and talented paraplegic war journalist who recounts his time reporting in the Middle East in the 416 page book, Moving Violations. He also tells of how he came to be a paraplegic from an auto accident at 19 and the crazy situations he’s gotten himself into — like being pushed in his wheelchair by an Iranian man chanting, “Death to all Americans!” Hockenberry’s life is nothing short of unique and will surely be enjoyed by all who read his journey.

     

    Wheelchair basketball paralympian John Gilbert discusses his job as a foster father

    Celebrating Father’s Day with Paralympian John Gilbert

    There’s no question that becoming a father changes a man. Maybe he becomes more protective, maybe a little more mushy and loving. Biological father, stepfather, disabled father or even foster father, unconditional love is unconditional love.

    John Gilbert is a living embodiment of this fatherly love. He’s a 29-year-old wheelchair basketball player headed to the Rio 2016 Paralympic Games, and in the past 13 months he’s learned what it takes to be a dad.

    So what’s the back story?

    Gilbert says he and his wife, Whitney, have known each other since as early as they can remember. He even recalls chasing her at her grandmother’s house when the two were children. But the rampant play stopped when Gilbert was nine; a tumor found on his T6 vertebrae severed his spinal cord, and he transitioned into a wheelchair permanently. He and Whitney remained friends throughout college — despite always having more intimate feelings toward each other.

    Finally, in Gilbert’s last year at the University of Missouri where he was studying biology, he asked her to be his girlfriend. Fast forward a few years and they are happily married and working for the local school district in Salisbury, Miss. They’ve been trying to conceive a child, which Gilbert says has been difficult for them, so they registered to become foster care parents in May 2015.

    “We wanted kids and we wanted to help kids,” Gilbert says, “and something kept telling us that foster care might be the way to go right now.” He and Whitney still hope to conceive, but he says they definitely don’t see their children as foster kids. “They’re our kids,” he says. “When you walk in our door, you’re our kids.”

    The funniest part:

    He and Whitney have already had eight children — though not all at once. But, by caring for children as young as four to as old as 15, he’s gained nearly a decade a parenting experience in one year.. He could probably write a book on parenting advice through the ages, but his biggest piece of advice, is this:

    “It doesn’t make a lick a difference whether you’re in a wheelchair or you’re standing up or missing a leg or an arm. As long as you love [your kids] unconditionally, no matter how those kids come to you … they’ll love you back,” he says. “They need that. They deserve that.”

    The Activity that Mentally and Physically Helped Gilbert Become a Better Father

    Wheelchair basketball paralympics team

    Gilbert has never let his disability stand in the way of his dreams. When his spinal cord was severed at nine years old, he took up wheelchair basketball a few months later. He was athletic prior to his injury – though not the best in his class, he admits – and he never let go of that passion.  And while many wheelchair users find it helpful to have wheelchair accessible vehicles or wheelchair lifts to get around, Gilbert has built enough strength to simply transfer himself.

    The lessons he’s learned from wheelchair basketball, he says, “teach you not only to rely on that group of individuals but even how to rely on family and Whitney and the kids at the house. I can’t even begin to say how important they are to keeping a healthy lifestyle all around.”

    But why does it matter?

    Gilbert says he believes his lifelong perseverance inspires his children; his hardships and ability to overcome them are a way for the kids to connect and bond on a deeper level.

    “Having as many ways that you can relate with the kids … where they can open up and start to trust you is vitally important, especially in foster care,” he says. “They’re all holding things in they don’t want to tackle or deal with because it hurts, but when they realize somebody else has gone through that … it’s alright to share and cry and just get it out … Nothing good comes from holding that in.”

    His Plans Post Rio 2016 Paralympic Games

    Besides bringing home the gold, Gilbert has a 10-year plan lined out to help him accomplish his goal of being superintendent of a school district after retiring from his Paralympic career. He already has his bachelor’s degree in biology and a master’s degree in education with an emphasis in biology.

    Now he says he’s working to get a superintendent specialization and is considering going for his Ph.D., in administration. Although, the most important to him, he says, is being there for his kids and other foster kids in need of homes.

    “There are so many kids who need help, and there’s such a shortage of homes,” he says. “I definitely encourage people — if they are even thinking about it … at least look into it because it is quite the opportunity…. it is awesome to help out those kids.”

     

    men's health week for wheelchair users

    Raising Awareness for Men’s Health Week: Wheelchair Edition

    Men nationwide are celebrating National Men’s Health Week June 13 through 19 by engaging in healthy activities, visiting their doctors and informing themselves of the various dangers that could inhibit their well–being.

    Male wheelchairs users are at risk for all typical health issues that concern able–bodied men but also have to be wary of potential wheelchair–specific risks.

    The National Men’s Health Month organization started in 1994 with the goal to “heighten the awareness of preventable health problems and encourage early detection and treatment of disease among men and boys.” They established this movement to encourage men to analyze current lifestyle conditions, and then determine what can be done to live a healthier, more satisfying life. And with the help of a wheelchair accessible van, male wheelchair users are one drive away from a plethora of health benefits.

    Get Tested

    Regular checkups and screenings are prevention tactics that both able-bodied and wheelchair-using males should implement. Info provided by Men’s Health Network. To learn more about each type of screening, click here.

        1. Physical Exam:every three years starting at age 20, two years at 40 and annually at 50.
        2. Blood Pressure: annually starting at age 20.
        3. TB Skin Tests: every five years starting at age 20.
        4. Blood Tests and Urinalysis: every three years starting at age 20, two years at 40 and annually at 50.
        5. Electrocardiogram Screening (EKG): when appropriate starting at age 30, every two years at 40 and annually at 50.
        6. Tetanus Booster: every 10 years starting at age 20.
        7. Rectal Exam: annually starting at age 20.
        8. PSA Blood Test: As decided by you and your physician.
        9. Hemoccult: Annually starting at age 40.
        10. Colorectal Health: every three to four years starting at age 50.
        11. Chest X-Ray: as decided by you and your physician starting at age 40.
        12. Self-Exam:check testicles, skin and mouth monthly starting at age 20.
        13. Bone Mineral Density Test: as decided by you and your physician starting at age 60.
        14. Testosterone Screening:as decided by you and your physician starting at age 40.
        15. Sexually Transmitted Disease: as decided by you and your physician starting at age 20, or at first sexual activity.

    Understand Wheelchair–specific Health Risk: Prevention & Treatment Options

    Wheelchair users often lead more sedentary lifestyles than able bodies and are at higher risk for certain health problems. The following information has been provided by doctors David G. Armstrong, founder of the Southern Arizona Limb Salvage Alliance, and Stanford Ho, MD at Arizona State University.

    Leg Swelling

    Leg swelling occurs when there is too much bodily fluid accumulating in one area. The treatment options include:

          • Compression Stockings tightly, but gently, hug the leg and apply pressure to force blood up and out of the legs.
          • Edema Pumps, like compression stockings, pump blood upward out of the legs.
          • Manual Lymphatic Drainage (MLD): is a massage therapy often recommended and performed by physical therapists or physiatrists, Dr. Armstrong says, in which external force is used to increase blood circulation.

    Skin Ulcers / Pressure Sores

    Skin ulcers and pressure sores happen when pressure is applied to the skin for too long. Dr. Ho recommends:

          • When and if possible, wheelchair users should stand or shift positions as often as possible to alleviate pressure in one area, Dr. Ho says.
          • Maintain appropriate exercise as discussed with a doctor or specialist.
          • Bowel and bladder hygiene and remaining dry is a crucial component to avoiding pressure sores, especially for those paralyzed in lower extremities. Sweat, urine or other liquids often lead to infection.

    Poor Blood Flow

    Poor blood flow is common for people with sedentary lifestyles or obesity and often causes swelling, pressure sores, blood clots and more.

          •  Apply any of the aforementioned strategies to combatting skin ulcers and leg swelling to help increase blood circulation.

    Blood Clots / Deep Venous Thrombosis

    These dangerous ailments occur when blood pools in one area and is not pumped to the necessary destination.

    Arteries transport oxygenated blood from the heart and lungs to the rest of the body, and veins pump blood from the body back to the heart. Aging, weight gain and lack of movement can make veins “lazy,” Dr. Armstrong says. Veins will essentially quit, causing the blood to clump together and block pathways.

          • Apply leg swelling prevention methods to combat blood clots.
          • Speak with physician or specialist if pain or discoloration occur and/or intensify.

    Obesity

    This common illness is determined by BMI (body mass index is a body fat to height ratio), is common amongst wheelchair users and can be caused by lack of healthy diet and exercise, medical conditions and more. Doctors or dieticians can help patients determine the cause of obesity, some of which might include: metabolic conditions (thyroid, for example), medication side effects, or lack of healthy diet or exercise; expert can then help patient devise a plan to get back to a healthy BMI.

    Live a Healthy Lifestyle

    Regardless of gender or disability, all people should abide by the following tips to improve their health:

        • Maintain regular sleep schedule, usually seven to eight hours nightly for most individuals.
        • Avoid smoking of any kind and avoid recreational substances.
        • Drink in moderation (if of legal age) and avoid binge drinking .
        • Maintain regular physical activity/exercise as appropriate for the individual. Mobility vans or wheelchair lifts and accessories are useful tools people with disabilities can use to transport to local gyms or exercise facilities.
        • Maintain good social supports, including family and friends.
        • Always practice safe sex (condoms, dental dams, etc.) and obtain regular sexually transmitted infection screening (STI), especially if change in partners occurs.