Thank you to the Christopher Reeve Foundation for allowing me to be a guest blogger to discuss some amazing projects I am working on with a beautiful organization called Open Inclusion. We work with people with disabilities and brands to make products and services more accessible for all!
Change only happens when we speak up, take action, and do something about it!
Over the last 18 months, I have worked tirelessly to marry my professional career with my disability advocacy work. I reached a point in my life where the work I engage in needs to be meaningful and help others in the disability community. I have come to realize this is who I am at my core – a person with a disability who believes in paying it forward, human kindness, and advancing inclusiveness for all.
I have been extremely fortunate to meet incredible leaders around the globe who have asked me to participate in delightful projects to help people in the pan-disability community gain meaningful employment, have their voices heard and time compensated for their insights. I am involved in many projects, but what is incredibly humbling to me is working with companies that truly celebrate my lived experience with a disability.
One such beautiful company I have recently started working with is Open Inclusion. Open Inclusion is an inclusive research, insight and design agency based in the UK and operating globally. Open has been built with, for and by people with disabilities. We amplify the voices of our diverse insight community by informing leading brands of their diverse customer need to help create solutions that are desired by people with disabilities, and better for all….”
Pain. Chronic pain. It’s no joke. It’s debilitating. It can lead to death. It can be physically and psychologically crushing to your soul. Living with physical paralysis, for me, pales in comparison to pain. If asked that “What If” question whether I would prefer to live in chronic pain or be paralyzed, at this moment as I write this article – I choose paralysis. This is a pretty powerful statement if you think about it. I am essentially choosing to practically go broke, have people’s hands in my body all day long, have someone dress me, use catheters and suppositories, etc. Think about what I am saying.
This is how debilitating my chronic pain is. For anyone who lives in chronic pain, your life has been undoubtedly changed forever. I know mine has.
When I was living in the ICU after breaking my neck in 2010, I was one of the unlucky ones who also simultaneously suffered a very deep pressure sore on my behind, pulmonary embolisms, and died a few times. I thought “this was the worst of it” to myself. Wow, was I in for a rude awakening 3 weeks after my accident!
It was pretty awesome to be a guest last week Hosted by BACKBONES and sponsored by the REEVE FOUNDATION with a good friend Chelsea McDonald. We really dove into some super personal disability topics that are just not normalized in mainstream society!
It was an honest, raw, and invigorating conversation on how we handle caregiving, sex, challenges, and triumphs with our husbands. A relationship with the added component of a disability is not necessarily harder than any other relationship, but there are certainly added considerations that have to be factored in to our everyday lives, especially because we are both quadriplegics and rely on people to help us with our caregiving activities each day!
I keep noticing these topics are slowly creeping up around the country and I am so pleased to have been part of this one;
Many of you know I’ve been fighting for an adaptive rowing machine called the Vitaglide for some time now with Blue Cross and Blue Shield.
I hit a dead end working directly with BCBS policy directors and I’m now introducing legislation with NC State Senator Jay Chaudhri in May. Very exciting!
In the meantime, I’m working closely with all of the folks at Vitaglide for promotion awareness of adapted exercise equipment for long-term wheelchair users.
They were so kind to write an article on me and all of the work I’m trying to accomplish with respect to health equity and not just health equality!
Every time I fail something, and I do fail quite a lot, or something stops dead in its tracks, I usually have 10 other things in the works.
Life can be utterly exhausting, but I know one person can make a difference even if it is only to inspire others to carry on the work they have started!
Thank you Vitaglide team for highlighting some of the work I am engaged in and spotlighting my consistent efforts for which I won Miss wheelchair North Carolina 2022 on — Health Insurance Advocacy! Nationals here I come in Grand Rapids Michigan from August 15th to August 21st!
You work so hard for so long on a specific project only to have it practically blow up in your face. I’ve been working with Blue Cross and Blue Shield policy directors for the last six months and I recently received beautiful “BS” letter as they say stating that my efforts to have adaptive exercise equipment reviewed under medical necessity was not going to be an option.
I have tried to play nice, it did not work, and that’s okay. I’ve simultaneously been working on legislation on multiple fronts to be introduced over the next few months and few years from different angles. I always try the path of least resistance first, this does not always work out, but it does not deter me either.
If you’ve been following my health insurance battles you will want to take a close read of this one because my entire disability advocacy career started out with health insurance equity. It is naturally a passion project near and dear to my heart and one which I will continue to fight for on so many fronts. What will ultimately end up happening is having to create a coalition of seriously smart lawyers, doctors, advocates, etc. in years to come. This mission is going to be measured in many years, not months.
Fortunately, my spinal cord injury has taught me the definition of extreme patience. For this I am thankful!
I may Sisyphus rolling the boulder up the mountain only for it to come crashing down on me. However, I will start rolling the boulder back up the mountain in real time! I will break the cycle eventually in the name of HEALTH EQUITY, and not just Health Equality.
Very cool podcast I was part of that offers a very unique perspective on how many of us with disabilities approach the conversations with our caregivers when we want to be intimate with a new person in our life, and how we handle those conversations.
Probably not something you think much about, but it’s an important topic that constantly gets pushed aside and is left unrecognized!
I personally have had a lot of really interesting experiences and conversations when I was engaged in the dating part of my life prior to getting married. Some wild conversations for sure 😉
This has been a project near and dear to my heart that I have been working on for the better part of a year, but projects have just been popping up left and there never really seemed to be a right time to take the leap. So, I decided weeks ago to just dive right in as they say (figuratively of course because I already took the physical dive 12 years ago;) – and, I certainly don’t have any desire to do that again!
I am incredibly humbled, honored, and proud to announce the launch of my new YouTube channel called
“Shower Talk with Ali – Where No Topic is Limit”
To complement my website and my writing I appreciate many people love to watch videos. In light of this, I’ve created this YouTube channel with the sole focus of approaching and normalizing uncomfortable topics in my life and the disability world so that folks from all walks of life can understand what many of us go through on a daily basis. This is not a channel just about inspiration, but really diving into understanding some of what many of us with disabilities live through each and every moment of our lives.
In the spirit of who I am I have approach many topics through the lens of dark humor, determination, and sheer grit at times. No matter what situation I may me dealing with in life I always seem to find the comedy behind every experience my life.
I do hope you enjoy, follow my channel, like, subscribe, and comment so that I might be able to make videos on what you are all interested in! This channel is by no means just for people with disabilities, but for EVERYONE may just be curious and loves to learn about topics that are very unfamiliar in your own life.
I am incredibly honored to have Billion Strong, an identity and empowerment organization designed to bring millions of voices of persons with disabilities together. I met Debra Ruh, Founder and Executive Chair of Billion Strong and CEO of Ruh Global IMPACT in the last year. She is a light in so many people’s lives, is incredibly bright, smart, and cares intensely about giving voice to people with disabilities around the world.
Debra invited me to be Secretary of the Board for Billion Strong and it is my distinct honor to serve this incredible global organization advancing disability initiatives.
There is a BIG difference between Equality and Equity, and while they are really important for those of us with disabilities because one size does not fit all in many aspects of our lives, it’s also important to appreciate the progress we’ve made in first world countries on this front. It’s imperative we continue to push for systemic change, but while we do so we need to stop and think critically about the unbelievable sacrifices the generations before us put forward in order to allow many of us to have the freedom to continue to fight for change!
“In law enforcement, a lot of what I saw broke my heart. I’d come home and take my clothes off and just shed the world away,” he (Dwayne) recounts … And while Dwayne’s non-textile appearance this Saturday afternoon might shock some, the reason behind it will come as no surprise to anyone familiar with a common 21st century prescription: self-care.”
I had the distinct pleasure to dine with Billy and a gaggle of other movers and shakers in the Raleigh, North Carolina Triangle area this past week. There were so many influential, inspiring, and well accomplished professionals engaging in fruitful banter.
How did I get invited to such a dinner? I had met each of these people individually over the last several months and, coincidentally, many of them were already well acquainted with each other as many of them ran in the same social, and political circles over the last several decades.
So, in a very “Ali” fashion I decided to be pleasantly persistent and arrange a dinner with new friends, old and reconnected ones.