Using a wheelchair for the first time can be overwhelming. From seating evaluations, to new equipment, to finding doctors, advocates, and therapists who can help you – many experiences while being a new wheelchair user can be daunting. This blog post is meant to be a helpful starting point for those seeking resources. For a more detailed list of information, check out the Mobility Map provided by United Spinal Association.

The Wheelchair Evaluation

A seating assessment/wheelchair evaluation is essential to determine the mobility equipment that best works for you. Each person has unique seating needs, objectives, and goals.

It is important to remember that the evaluation revolves entirely around you. If you have any questions or concerns, make sure to communicate them promptly to your team (which includes a physician, a physical/occupational therapist, and an assistive technology professional). A blog post by the Christopher & Dana Reeve Foundation has more information.

The evaluation process is comprehensive. Strength, posture, coordination, sensation, tone, cognition, vision and more are assessed. How and where you intend to use your new mobility device is critical in determining selection.  You are encouraged to bring photos to your evaluation. This can be very helpful for your clinical team to better understand the environment where you live and are active. 

Equipment options are then considered, with you and your clinical team ultimately identifying the device(s) to best meet your mobility needs. 

After the evaluation, your therapist will document the equipment recommendations and justify why every part and piece is necessary to best meet your needs, providing safe and functional mobility. 

Experimenting with New Wheelchairs

Finding the right wheelchair is a personal journey, and it’s helpful to try many different devices. Figure out what works for you – in terms of size, power, capabilities, and features. What could be a great wheelchair for one person may not be suitable for you, depending on your needs and goals.

Use different types of equipment and, if possible, test the devices out in your home, at work or school, and in your community: anywhere you think you will be spending time. Make sure the device fits your transportation needs – perhaps you drive to work, so make sure it can fit in your vehicle. Or, if you use public transportation, make sure you can maneuver it on the bus, train, subway, or other means of transportation.

As you evaluate your wheelchair, keep in mind, this will inherently become an extension of you and your individual personality. Feel free to pick and choose the colors, designs, and parts that make up your wheelchair which reflect who you are. If pink is your favorite color and it’s available, select pink! Showcase your personality through stickers, patches, and lights, if you’d like!

There are many different types of wheelchairs offered by companies and distributors across the country. Here’s a quick, and by no means exhaustive, rundown of what might work for you.

Manual chairs have four wheels: two casters and two main wheels. Manual chairs can be self-propelled, or they can be maneuvered by a care provider.  They can be self-propelled by using upper extremities and/or by using your feet.  Some manual chairs that are propelled by care providers have smaller rear tires. Manual chairs do not have any power/electricity; they are usually foldable or collapsible, making it great for travel and transportation. Some brands of manual chairs include TiLite, Ki Mobility, Motion Composites, Quickie and RGK.

Another option is power assist: an attachment for a manual chair that can provide power and help propel you. It can help preserve energy and reduce pain by reducing the physical exertion it takes to propel your wheelchair with your upper or lower extremities. Some options for power assist include Smart Drive, SMOOV, and Xtender.  

Power chairs usually have two large drive wheels and two or four smaller wheels called casters, which help with stability. Driven by a joystick, the power chair can move forwards or backwards and turn with battery power. There are also different drive types: front-wheel, mid-wheel, and rear-wheel drive. They each maneuver differently and have their own benefits and drawbacks. When evaluating power chairs, see which drive type will best suit your intended use and environment. Some companies that manufacture power chairs include Quantum, Permobil, and of course, Mobius Mobility.

An outdoor/adventure chair is for outdoor use and on all-terrain surfaces. These chairs can all look very different, depending on their capabilities. Some have four or more wheels, while others have large tracks. Some are powered, and some are propelled with your arms or with the help of someone else. Some outdoor chair brands include the Action Trackchair, Advenchair, and the GRIT Wheelchair. The iBOT® is also considered an all-terrain chair, with the added bonus of being able to wash off the powerbase and use it inside. If you are an avid beachgoer, there are chairs for you as well. Beach chairs like the Hippocampe and Water Wheels chair all allow you to go on sand and have your wheels touch the water.

Finding Help as A New Wheelchair User

During your time of transition as a new wheelchair user, you may need help surrounding your mental and physical healthcare needs, legal obligations, and employment or educational requirements. There are resources and organizations ready to help – just a few are linked below.

RESNA

If you are researching assistive technology professionals and need some references in your area, the Rehabilitation Engineering and Assistive Technology Society of North America has a directory of professionals on their site. Simply input your location, and a list of contacts with their information will populate. To get a mobility evaluation, speak to your doctor to get a referral to a seating clinic.

United Spinal Association

Since 1946, United Spinal Association has advocated for people with spinal cord injury and disease to overcome stigma and barriers that face people with disabilities. By working to remove physical barriers to inclusion, United Spinal works to help people with SCI/D pursue their goals and live life to its fullest. The United Spinal site houses case studies, surveys, disability publications and podcasts, wheelchair reviews and more. You can also find links to peer support groups and assistance for veterans, employment, and a disability products/services directory.

SPINALpedia  

SPINALpedia is a social mentoring network and video archive where people with spinal cord injury can find knowledge and community. Their site features peer mentoring and employment resources, blogs, and links to legal supports.

Christopher & Dana Reeve Foundation

The Christopher & Dana Reeve Foundation is a free and comprehensive source of information for people living with paralysis and their supports. The foundation also fundraises and organizes for research to support the progress to an SCI cure.

NAMI

If you are struggling with mental health or illness, the National Alliance on Mental Illness has a page with information and support resources for people with disabilities. Check out our recent blog post on mental health and disability for more NAMI studies.

Psychology Today

If you need a therapist or psychiatrist for mental health and illness concerns, Psychology Today also has a directory of professionals who may be able to help you, sorted in order of where you live. 

The Model Systems Knowledge Translation Center

This online directory from MSKTC offers factsheets, videos, podcasts, informational comics and more on the topics of traumatic brain injury, spinal cord injury, and burn injury.

Getting Support & Ensuring Inclusivity

As you may already know, the world is not yet fully accessible for people with disabilities. Although major improvements have been made since the Americans with Disabilities Act of 1990 (check out our blog post about the ADA here), people who use wheelchairs are not always afforded equal access to where they need to go. For access assistance, complaints, information, and resources you can contact your State Governor’s Commission on Disability. If in New Hampshire, here is their website.

So, how can you be successful and included at work, school, and in your community?

Vocational Rehabilitation

If your place of employment is no longer accessible to you, vocational rehab (VR) can help you adjust and prepare for your career.

  • VR ranges in services and supports from career counseling, educational guidance, job training, help securing assistive technology, and more, according to the New Hampshire Department of Education.
  • The goal of VR is to help people return to work or become more independent. VR counselors empower people with injuries or disabilities to reach their career or educational goals. To find a VR therapist in your area, click the link here: https://rsa.ed.gov/about/states.
  • Additionally, most State Governor’s Commissions on Disability have a Title I Employment specialist to assist you and your employer with workplace accommodations for your specific disability needs.

Disability Support at School

Everyone should feel supported and included in school. There are certain protections for children and college students who have a disability when it comes to their education.

Children who have a disability are protected by the ADA and the federal government at school. According to the U.S. Department of Education, the Individuals with Disabilities Education Act (IDEA) guarantees that all eligible children who require special education, regardless of the nature or severity of their disability, receive a free appropriate public education in the least restrictive environment. Under IDEA, school officials and the child’s parents work as a team to develop an individualized education program that details how the student will access education services.

College students who have disabilities are also protected. According to the Disability Rights of South Carolina, Title II of the Americans with Disabilities Act (ADA) protects people with disabilities from discrimination by state-funded schools such as state universities, community colleges, and vocational schools. If you feel you are being discriminated against because of a disability, you can file a complaint with the Office for Civil Rights of the US Department of Education. For information about how to file a complaint, click here: https://www2.ed.gov/about/offices/list/ocr/docs/howto.html.

Check with your school or university to see if they have a disability rights and inclusion committee to represent students with disability. If they do not, consider working with the student union, government, or affairs to create one.

Disability Support at Work

Likewise, everyone should feel safe and heard at work – regardless of disability. At your job, ask questions of your supervisor and human resources department to see what they are doing to foster inclusion and ensure accessibility. You can work with HR if you have concerns to help remedy them. But if the issues are not remedied, you can file a complaint through an agency called Equal Employment Opportunity Commission (EEOC). More information on how to file a complaint is here: https://www.ada.gov/file-a-complaint/.

Your employer has legal obligations to provide reasonable accommodations for you if you have a disability. According to the US Department of Labor, under Title 1 of the Americans with Disabilities Act (ADA), a reasonable accommodation refers to a change or adjustment made to a job, work environment, or standard hiring procedures. This legislation ensures that individuals with disabilities are given an equal opportunity for employment and can thrive in their jobs. It is important to note that these accommodations should not be perceived as preferential treatment. Employers have the option to implement various types of accommodations, such as installing ramps or modifying restrooms, ensuring accessibility of software, providing screen reading software, adjusting policies to allow service animals in the office, and modifying work schedules to accommodate employees with chronic medical conditions, allowing them to attend medical appointments and fulfill their work obligations at different times or locations.

If you need help with workplace accommodations, contact the Job Accommodation Network (JAN), which is a technical assistance center that provides free, expert and confidential guidance on workplace accommodations.

Again, if requiring employment and/or employer assistance, most State Governor’s Commissions on Disability have a Title I Employment specialist to assist you and your employer with workplace accommodations for your specific disability needs.

Peer Support

The best counsel and perspective can sometimes come from people who have been through similar experiences as you. Seeking support from a peer group might be beneficial while adjusting to life using a wheelchair. As mentioned in the above sections, websites like United Spinal Association, SPINALpedia, and the Christopher & Dana Reeve Foundation are good starting points when looking for peer support groups. You may even be able to find some that are specific to your illness, injury, gender, age, or veteran status.

Staying Active & Engaged

You will probably hear from your clinical team: it is important to stay active while using a wheelchair.

Staying active might be easier once you find a sport or hobby you enjoy – and that may entail experimenting with lots of different activities that work for not only your level of ability, but your interests and passions. When it comes to wheelchair sports, there are more than you might imagine, including:

  • Wheelchair rugby
  • Adaptive archery
  • Adaptive horseback riding
  • Adaptive skiing and sledding
  • Adaptive tennis
  • Wheelchair racing
  • Wheelchair dancing
  • Wheelchair basketball
  • Handcycling
  • Wheelchair tennis
  • Wheelchair skate boarding
  • Rowing
  • Shooting
  • Bowling
  • Canoeing
  • Darts
  • And the list goes on….

Move United is an affiliate of the US Olympic & Paralympic Committee and works to ensure that everyone has access to sports in their communities. Check out their more exhaustive list of adaptive sports here, which has links to stories and resources about each activity. This is a great starting point if you are unsure of what sport interests you. Each activity in their list has links to leagues, teams, and places to participate in your area. Move United also has a calendar on their site where they have signups for their own sponsored clinics and events.

If you are a veteran with a disability and looking for ways to get involved with communities of people who enjoy sports, check out events organized by the Paralyzed Veterans of America – there are chapters across the country that host events for trapshooting, disc golf, basketball and more. The National Veteran Wheelchair Games is the world’s largest annual wheelchair sports and rehabilitation event solely for veterans. The games are held every year for veterans competing in 22 sports. You can compete at any level, or volunteer.

If you are an avid skier or winter sports fan, check out your local ski mountain for programs for people with disabilities. Many, if not most, mountains provide options for those looking to ski, or snowboard, along with trained staff who can assist you when you need help with learning new skills.

In whatever way you choose to be active, make sure you are having fun, feel supported, and have the equipment to enjoy yourself. Get out there and have fun!

Adaptive Clothing & Equipment

As a wheelchair user, you may run into some difficulty with traditional clothing. There are companies that now create adaptive options for your wardrobe.

  • IZ Adaptive is the world’s leading brand in fashionable, stylish adaptive clothing for wheelchair users, whether that’s spinal cord injury (paraplegia and quadriplegia/tetraplegia), brain injury, movement disorders, or people living with limited mobility.
  • French Toast creates adaptive school uniforms, like pants and skirts with lift loops, and shirts with flat seams for comfort.
  • No Limbits is another brand that creates adaptive clothing like pants with thigh pockets, no back pockets, and a hidden catheter leg loop. They have a line specifically for wheelchair users.
  • ABL Denim sells mainly jeans, with side zippers to hip level, among other adaptive features.

Many larger clothing companies have adaptive lines, like JC Penney, Target, Tommy Hilfiger, Aerie, and Kohl’s.

Some wheelchair user specific gear may be helpful to you as well:

  • If you are a manual chair user, using your hands to repeatedly start, stop and turn your chair can cause blisters, pain and calluses. Some people who use a manual wheelchair find that gloves are beneficial for protecting their hands. You can find options on Amazon and Walmart, but here is a comprehensive list from New Mobility Magazine that could be helpful: https://newmobility.com/wheelchair-gloves/
  • For power chair users, a wheelchair saddle or mobility bag can hold your things – like your wallet, keys, books, phone, and chargers, and it can attach to the side or back of your device. Many power wheelchair distributers sell them on their site, but Amazon and Walmart have a few options as well.

Helpful Stories

When adjusting to life as a wheelchair user, it may be important for you to find stories of people who have had similar experiences. There are great examples, found in movies, books, articles, and blogs. Check out the short and by no means complete list below:

  • Being Heumann is a book by the famous disability rights advocate Judy Heumann. This book details Heumann’s life and legacy as she fights for equal access to employment, healthcare, and education, among other important facets of human life.
  • New Mobility is a print and online magazine that shares stories (articles, comics, product reviews, newsletters) of people who use wheelchairs. These stories range from parenting in a wheelchair, self-defense for wheelchair users, and temperature regulation.
  • Curb Free with Cory Lee is a travel blog written by a well-known wheelchair user named Cory Lee. Lee details his experiences traveling in a power chair, tips and tricks for successful trips, and other helpful content.
  • From There to Here is a collection of 45 people’s stories about their lives living with spinal cord injury. These essays detail the possibility, adjustment, acceptance and meaning in their respective journeys.  
  • Crip Camp is a documentary about the disability rights movement and a summer camp for teenagers with disabilities.
  • Rising Phoenix is a documentary on Netflix about the Paralympic games’ history and legacy, with interviews from prominent Paralympians.

Conclusion

While adjusting to life as a new wheelchair user, it is important to remember that you are not alone:  there are nearly 65 million wheelchair users worldwide, according to the World Health Organization. There are ways to connect with people who use wheelchairs online, in your communities, and at events and expos.

There is also power in trial and error: when it comes to your everyday routines and equipment, try to experiment. Try new devices, new clothes and tools, and read and learn from others. If something does not work for you, try something else.

At first, you may not feel comfortable or want to ask for help. But reaching out for connection could allow you to find purpose and meaning. Speak up when something is not right for you or the disability community. Remember that there is strength within both you and your communities.

For more information on disability, mental health, and resources, see our blog post here: https://mobiusmobility.com/2023/05/mental-health-disability/

If you are considering a power wheelchair and would like to explore the iBOT®, reach out to Mobius Mobility today by calling 833-346-4268 or emailing info@mobiusmobility.com