DISABILITY REPRESENTATION – What is Beauty?
Yesterday I had an hour to kill and I decided to do a fun filled beauty Photo-shoot for myself. I think my mother was an excellent photographer. The behind the scenes of setting my body up, well that was rather comical and gave me a great giggle for the day, but it propelled me to think about something more intellectually and emotionally substantial.
HEARTBREAK – The PECULIAR Path of GRIEF
Despite my quirky exterior and rosy attitude as many seem to comment on, I, too, really struggle at times. Honestly, who doesn’t? It’s human nature.
Many of you know my life’s purpose and mission is to help other humans in a range of different capacities, but with so many tremendous personal things going on in my own life at present — I was overcome for a few hours with this incredible feeling of heartbreak.
Heartbreak for what you might ask?
PERMOBIL HERO of the YEAR AWARD & KEYNOTE SPEAKER
I’m humbled & speechless beyond words!
I was invited by Permobil and that Permobil Foundation to Nashville, Tennessee this year to be there Key Note Speaker for their incredible Casino Night fundraiser to raise funds for wheelchair users to help them purchase components of complex rehab customized wheelchairs, full wheelchairs, smart drives, supporting disability organizations, and so much more.
For those unfamiliar, Permobil is a global corporation that manufactures customized manual and power wheelchairs (among other products such as Roho cushions and smart drives) for those of us with significant mobility impairments. In my humble opinion, they are the crème de la crème of wheelchairs and you can customize them to fit your body like a glove.
Of course, I might be biased because I have been in a Permobil wheelchair for the last 13 years since breaking my neck in 2010, but they really are beautifully designed chairs with all of their staff out to truly help wheelchairs not only survive in life, but to thrive.
read more…FROM START TO FINISH – WHEELCHAIR AIRLINE TRAVEL ACROSS THE COUNTRY!
Over the last week I traveled to Anaheim, California from Raleigh, North Carolina for a medical technology conference I was speaking at. I’ve traveled on planes before, but I’ve always had an entourage of people to help me as a quadriplegic paralyzed from the chest down with no hand function.
I know so many of my friends who either travel alone or only travel with one companion. I wanted to pull my big girl pants up and try this myself with one person because, well, this is life. I cannot always have an entourage with me and I feel blessed that I have been able to thus far.
I took a journey across the country with one of my amazing humans in my life who helped me and it was an adventure to say the least. There was good, bad, and the ugly – although, all with laughs along the way even in absurd circumstances.
I learned some key valuable lessons, iterated a design on breaking down my wheelchair for the plane, and try new techniques with teaching the staff in the airport how to lift me properly without the help of my caregiver all the time.
I also learned a key lesson about Boeing 737’s, a very standard plain for domestic flight travel in the US, with respect to the cargo hold. I know the cargo hold schematics with respect to height is about 35 inches, which my chair does breakdown too.
What I did not know is that the door opens inward, which makes it a lower threshold for power chairs. This provided a great deal of stress as I had to walk many individuals through how to gently tilt the chair without tipping it over to get it inside.
It worked quite well on the way to California, but not so much on the way back when our plane was broken, they had to re-load and unload me + my wheelchair multiple times. Thankfully, the wheelchair damage was cosmetic, but still need to figure out a better solution for the future.
In any event, I created a YouTube video from start to finish to hopefully give confidence or provide some useful strategies for fellow wheelchair users.
I know this experience may make some folks not want to travel by wheelchair, but while we are fighting for systemic change in the airline industry, we still need to learn how to adapt to unforeseen circumstances in order to enjoy our lives as well!
This is what we do best, I find, in the disability community – we become the most creative problem solvers in all aspects of our lives personally and professionally!
REALITIES OF QUADRIPLEGIC LIFE – WHAT’S THE ALTERNATIVE?
I preface this article by saying first and foremost:
- I am very Quirky.
- I find humor even when I’m chained up to a literal hospital bed in China after spinal surgery.
- I find hope where I didn’t know it existed.
- I love to help other human beings through incredibly tough times, offer a change in perspective, and find incredible joy in making people smile.
This is not to say that life as a quadriplegic paralyzed from the chest down with paralyzed hands and fully dependent on another human being for my physical survival does not take a toll on my mental psyche at times. People often comment on my incredible resilience and strength, and while it’s true, I am also human.
I would say I can probably handle more than most people, but I have breaking points as well.
2023 has been one of the best and worst years of my life to date. Professionally life is taken off in these incredible directions, especially with speaking, and I’ve made some amazing friends along the way.
Personally, things have been rockier than they have been in many years and I don’t really feel that it’s appropriate to comment on too much of the personal because it involves other people. There are always two sides to a story and I certainly would not want to share just one version here because everyone has their own opinions.
HOTEL ACCOMMODATIONS – One Size Does Not Fit All – Adapting to your Needs
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?
Creatively.
Remote Work vs. Hybrid Work – Are we going backwards in inclusion for the Disability Community?
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.
DID I WASTE 7 YEARS OF MY LIFE?
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…TAKING INCLUSION TO A NEW LEVEL – The Time is Now!
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.
For over 1 billion of us of who move, sense, think, and communicate differently – digital accessibility is a life-line for many of us.
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!