Traveling is challenging enough as a quadriplegic with respect to bed heights, doorway entrances, accessible showers, the list goes on. I always travel with a caregiver. I actually have less needs than a lot of my friends because I pretty much stick my head in the sink to wash my hair and take a shower on a bed.
I don’t need access to so many things my friends do. However, there are a few key differences that are essential for safety and comfort when I’m traveling to hotels.
One of my “medical curses” you could say is my skin. You look at me I quite literally get a pressure sore. So, how soft the mattress is is critically important and I also need to sleep at a 20° angle for respiratory issues at night. With paralyzed abdominal muscles I breathe my diaphragm, so I don’t get as much oxygen into my lungs as an able-bodied person does.
There are certainly devices you can purchase to put under the mattress to inflate the head or pillow top foam overlays I could bring with me. However, if I brought all of the equipment that would make me incredibly comfortable in a hotel room, I would fill up a van (when I drive places) to the brim, and would likely be out of luck when traveling by plane.
So, what have I had to do? I have to adapt.
How do I do this?
Over the last year I started to notice a shift in LinkedIn job postings, which seem to flood my inbox each day. I started to observe that many of these jobs are advertised as remote, but are really hybrid now.
I understand the importance of working in person for team building, but I have several friends with significant disabilities who are unable to leave their home for work say that the company they applied for would not consider remote work 100% anymore.
I then started critically thinking about equity vs. equality. I am just as efficient and effective in the virtual world and this is my form of independence. For many of us with disabilities, tech accessibility and employment equity are our connection to the outside world.
Just as the health insurance industry is moving backwards by slowly starting to discriminate against people with disabilities by reducing the number of in network providers; many employers, even if it’s unintentional, are discriminating against fully qualified candidates with significant disabilities who still need 100% remote work.
Many of you may not know this, but I spent the first 7 years after my accident in and out of hospitals with multiple surgeries including multiple life-threatening pressure sores, spinal cysts, pulmonary embolism’s, hyperthyroidism, osteoporosis, cervical cancer, infections, etc. I even spent several years in China for lifesaving spinal surgery due to a failure in the US healthcare system.
I was working as a full-time professional, but had no sense of community during these years. I pretty much kept to myself and was mostly with my family. In 2017, I started to see so many of my classmates from university rise to the top in their careers. I felt as though nearly a decade of my life had passed me by and I felt defeated. I felt unaccomplished. I felt like I was lagging behind. Truthfully, I felt like a failure.
What did not occur to me until a few years ago was that every single experience during those 7 years, not only shaped who I have become, but through my lived experiences of disability and the challenges I endured paved an incredible new path in my professional & personal career.read more…
It was a huge honor to work with the Lenovo team, Amazing Studio, Ada Lopez with the Product Diversity Office, and Shaholly Ayers (Disability Influencer) to make a commercial on taking accessibility, inclusive, and universal design a big step beyond what many companies still do not consider as a key strategic business imperative.
More than that, to make digital accessibility possible in many instances, the physical design of product’s is equally essential for so many of us with disabilities. As an example, I use Dragon speaking naturally dictation software as my hands are paralyzed as a C6 quadriplegic.
However, there are times with my limited hand mobility that I need to take my laptop on the go. It’s so important how a laptop is designed with respect to how sensitive the mouse is to my paralyzed fingers, how spaced out the keys on a keyboard are, and how I can rotate with adaptive behavior my arm to turn on the laptop. The list goes on.
Each of you may be a day away from potentially joining a club that will require you to adapt in the most creative of ways.
If you should, it behooves all corporations and society at large to pay attention to Diversity, Equity, inclusion, and Belonging –in company culture, digital accessibility, and physical design of products and services for consumers and employees with disabilities.
It was my honor to be an actress for a day, as it was tremendously fun, but it’s about Smarter Technology for All.
Thank you Lenovo for continuing to step up in, not only in understanding how technology can transform lives, but in paving the way for other companies to follow your lead!
My life. It’s complex. It can be challenging and downright overwhelming at times. I find humor in places that most likely would not – even when I’m tied down to a hospital bed in China after major spinal surgery in the ICU.
The other day I was rolling around my bed with my caregiver and started to think about how I am naked 60% of my day. Seriously! I have people’s hands inside and outside of my body, and the only privacy I maintain are my personal thoughts. Of course, this can be challenging at times, but over time I’ve learned to adapt to the unknown. I redirect, reimagine, and repurpose my life each day. Such as the life of a quadriplegic dealing with bowel, bladder, dressing, showering, etc.
It’s a really good thing that I’m European. I grew up running around naked on an out island in the Bahamas and topless half of my life with a German mother who believes that less cloth’s is more. Translation — I’m really not shy about being naked. Thank goodness otherwise I believe I would not have the sense of humor I have today.
I was thinking about all of the positions my caregiver twists me every day and I just started to laugh out loud. We decided to showcase a video with my “standard daily poses” to illustrate some of the many things I deal with throughout my day.read more…
As we approach the end of Disability Pride Awareness Month this July, I am reminded of the fragility of living my life as a quadriplegic and all that I’ve been through. I’ve actually been thinking quite a lot about certain conversations involving tremendous giggling with my caregivers about the absurdity of the completely normal conversations we have in my everyday life with my disability. They are funny, quirky, raw, and truly the authentic side of my life as a wheelchair user.
Upon further reflection I was wondering why I have the need to share this with the world? Most of what I write and speak on center around the core message of normalizing highly uncomfortable topics in disability life with a dose of dark humor and authenticity.
It’s not what you do, it’s why you do it
I’ve always been pretty open about my life, probably too much, and over the last few years I’ve completely turned my life upside down professionally to switch careers.
I returned back for the most epic experience I’ve had in many years after attending the National Speakers Association 50th Anniversary Influence Conference. I was listening to the top global speakers around the world and something hit me. In my soul, I finally figured out what my purpose is in life.read more…
A huge thank you to the American Medical Rehabilitation Providers Association (AMRPA) for writing such a beautiful article on so many challenges many of us wheelchair users continually strive to fight for health equity in our community!
“Seat Elevation: A Campaign for Coverage
Despite Ali’s optimism, which continues to shine through in her effervescent personality, the American healthcare system has proven itself to be a formidable foe in the fight to obtain coverage for medically necessary equipment. Much of Ali’s advocacy over the past few years has centered around a couple key pieces of equipment: seat elevators and standing wheelchairs. Each of these devices massively improve quality of life for their users, allowing far greater freedom of movement, independence, and safety.[PS1]
So, when in 2020 Ali was eligible for a new power wheelchair, it only made sense to request a chair with power seat elevation. The request was promptly denied, however, beginning a months-long battle that eventually culminated in Ali successfully obtaining a seat elevation chair after exhausting all possible appeals. There was one caveat, though: The decision to cover the new chair, according to her carrier, was not a precedent — in other words, the decision would not apply to others who would benefit similarly from the equipment. Though Ali was ecstatic to be receiving the equipment, the decision seemed less like a major victory and more like placating someone who refused to give up when most people would.
Unsurprisingly —it’s what she was arguing for all along! — seat elevation “has transformed my life,” Ali recently told AMRPA’s Medical Rehab Matters podcast. For her, it means tasks such as cooking, brushing her teeth and transferring from her wheelchair to her bed can now be completed independently and safely. In seeing how medically necessary a power seat elevator indeed is, Ali did not give up the fight but instead continued to be a part of the campaign to have CMS classify all power seat elevators as medically necessary — not just hers.“
Check out the latest episode of Wheelchair Nerds as we discuss the Centers for Medicare & Medicaid Services’ decision on coverage for seat elevation. There is a lot to unpack on the approved criteria and next steps, and Ali Ingersoll and Jim Stephenson join us to discuss the impact of this decision and consider what’s to come.
Each day LinkedIn consistently sends me job alerts on Diversity, Equity, and Inclusion (DEI). I haven’t taken the time to turn off these little notifications as my plate is beautifully full in life at the moment. I do, however, find myself clicking on these jobs from time to time to read what they’re all about, requirements, qualifications, etc.
I’m also amazed when a job posting goes up that there are usually over 100 applicants within just a few hours. I suppose I’m keeping my pulse on the DEI landscape in general as this is such a hot field now (rightly so), which I do hope remains consistent in the decades to come. The other day a very well-known medical company posted a job for a DEI Consultant position that was advertised as remote. I was reading the job description and it seemed pretty boilerplate for so many I see regularly at first glance that is. What I discovered upon reading further raised an incredibly bright red flag for me.read more…