A zoomed out full body shot showing three Black and disabled friends (a non-binary person with a cane and tangle stim toy, a non-binary person sitting in a power wheelchair, and an invisibly disabled femme) smiling and taking a cell phone selfie together. All are outdoors in front of a white wall.

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This is written by Kari Turner, who has CP, on questions to ask regarding equipment for people with CP, things to consider in looking for or at equipment, and how to determine what’s really useful or needed.

How do we as people with cerebral palsy (CP) equip our lives? Or equip ourselves to live?

I began reflecting seriously on this question in 2007, when I took an integrated dance class. I, whose experience with mobility devices had previously been limited to stints on a walker or forearm crutches between operations throughout my childhood, was struggling one day to accomplish the choreography on my uncooperative feet. In a moment of generosity as well as great insight, my classmate, also a person with CP, lent me her wheelchair in order for me to try the choreography again. It worked, and I got a crash course not only in how to dance in, but also how to operate, a manual wheelchair. 

For me this was a revolutionary moment in many respects. First, because it was a creative and artistic opportunity for me to try wheelchair dance. Also, and more importantly, it began my unpacking of my own biases and internalized ableism regarding mobility devices. I had long been conscious of the problematic nature of the language people tend to use to describe the use of said devices, particularly wheelchairs. How often have you heard someone described as “confined” to a wheelchair, or wheelchair “bound”–as if with chains?

But just as in my dance class the wheelchair had freed me to accomplish the choreography I could not do with my body alone, a wheelchair or other device is not a binding force, but rather a means of liberation for the user, who has the equipment they need to accomplish their activities of daily living (ADL) and more! In dance class I got to experience this liberation firsthand, beyond the theoretical understanding I had developed through disability studies and disability community work. As a result of this experience, and subsequent discussions with other folks with CP who have come to their own use of mobility devices over the years, I began to rethink my own relationship with them, and with myself. Eventually I did indeed come to consider myself “wheelchair bound,” as in, “bound to use a wheelchair someday!”

I also began to understand the application of accessibility equipment more inclusively, beyond simply the use of wheelchairs or other mobility devices. I have learned a lot about things like universal design, assistive technology, and adaptive clothing. I’ve even learned to frame my struggle to keep myself adequately shod in terms of accessibility equipment use!

What equipment or accessibility tools are commonly used by folks with CP?

People with CP often use manual wheelchairs, power wheelchairs, posterior rollators, walkers without wheels, Lofstrand crutches, and leg braces. We may also use predictive text on our computers or cell phones because it makes typing easier. Those of us who may be nonverbal or have limited speech use communication boards and other types of augmentative and alternative communication (AAC) devices. Some people with CP also have hearing loss or auditory processing issues, so closed captioning can be a lifesaver. 

Even without hearing issues or any other “comorbidities,” many of us choose to use closed captioning and other accommodations in solidarity with other disabled people. We want to make our homes as accessible as possible, and to normalize accessibility by making a greater number and variety of disability accommodations a regular part of our own everyday lives. 

That said, the types of equipment each of us use depend on our own discrete, unique needs. CP has such a wide umbrella that it can be difficult to determine a specific set of tools or pieces of equipment that can be used by everyone with CP.

What might a person with CP look for in a piece of adaptive equipment?

Durability, functionality, and customization options are important. The user needs to know how to make a particular device work for their own needs, how to deal with the repair or replacement of it, and how to make it reflect their own personality. 

What is helpful–or not–when it comes to accessibility tools of various kinds? 

It’s important to talk to other users of similar equipment about their experience with different devices. Understanding issues of quality and timing as well as straightforward wear and tear is essential. 

So, what are some questions to keep in mind when looking for a piece of adaptive equipment?  

To find the right piece of equipment for you, it may help to consider the following:

How often do batteries or parts need replacing? (Never, ever wait until it starts dying to replace a battery, especially on a power chair!)

Will this device facilitate my independent movement without adversely affecting my pain levels?

Can I control or otherwise handle the device with ease?

Are the arms, seat, ankle straps, footrests, etc. sturdy, comfortable, or roomy enough for my body? 

Does the device fold or otherwise meet my needs to transport and store it when not in use? 

A person’s disability status and equipment needs can change over time–sometimes even overnight! Nondisabled people in particular should keep in mind that the  pieces of adaptive equipment disabled people use are NOT optional. There should be stricter requirements and consequences in place for healthcare or insurance companies whose administrators deny reasonable, documented requests for repairs, or for new equipment when necessary. For example, it should not take weeks or months for manual wheelchairs to be repaired and returned to people who literally depend on them to move from Point A to Point B. Company employees who damage equipment should be held financially responsible for replacing these devices within predetermined, specified time periods.

It’s also important to consider the built environment when talking about accessibility equipment. Non-slip grab bars in bathtubs and showers would go a long way toward ensuring safety while bathing in hotels or hospitals. Widening doorways, standardizing ramps, and ensuring that all door handles are operable with a closed fist would consistently allow wheelchair access and improve accessibility for all people. Universal design benefits everyone! 

Is there any standard equipment for people with CP?

It is definitely not helpful to think in terms of a “one size fits all” mentality about people with CP, regarding the equipment we use or anything else. Just like all other disabled people, people with CP are all different individuals with various needs, demands on our schedules, and personal expectations. This applies not only to our lives in general, but also to how we navigate the non-inclusive world, which would be completely inaccessible to us without the assistance of the adaptive equipment we need.

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