MS. WHEELCHAIR AMERICA 2023 – HERE I COME!

It’s hard to believe that nearly 10 months have passed since being crowned Ms. Wheelchair North Carolina 2022.  I have been engaging in so many advocacy activities over the last year to further my advocacy mission. 

I am just a week away from heading out to Ms. Wheelchair America 2023 to compete with 22 other amazing wheelchair advocates in a competition that is going to create memories for a lifetime.

I looked up some of my amazing competitors, some of whom are actually friends of mine, and they all have fantastic platforms engaging in meaningful work to make our society more inclusive to folks with disabilities.  It certainly going to be stiff competition for sure.

I know people who lose competitions probably say this all the time, but honestly, WIN or LOSE I am certain of one thing.  All of the advocacy work I engage in around the country and globally involve collaborating with people.  I don’t just mean anyone, but rock-star disability advocates in their own respective fields regardless of what disability they may have.

So, I KNOW THIS FOR SURE — I will be collaborating and partnering with many of these rock-star women for years to come on so many different missions in the name of making the world we live in more inclusive for future generations.  I commend those that came before me and it is only fair that I do my part for those who will take over in the decades to come.

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Dating with a Disability

Thank you Wheel:Life sponsored by Comfort Medical to allow me to get back to my roots to dive into how the Quirky Quad first began with Dating and Disability.

Click Here for Wheel:Life Article

Excerpt:

“The Dating Mindset

Dating – a word loaded with so many emotions and often, a word that evokes the feeling of being utterly overwhelmed.  If you add in dating with a disability, heightened anxiety tends to be the “norm” in our community. 

After I broke my neck in 2010, becoming a C6 quadriplegic, I spent the better part of six years believing dating was a fairytale conceived for the able-bodied population. 

I went through internal struggles living in hospitals for years on end with seemingly insurmountable medical complications and learning to accept my body the way it was. I didn’t see myself as a sexually beautiful human being.  Essentially, I felt as if I was asexual, and I couldn’t fathom the concept of another person finding me sexy because I couldn’t muster up the strength to even look at myself in the mirror for nearly two years. 

When my medical life started to become stable, something very interesting happened to me almost overnight – I decided to take on the Herculean mission of trying to date.  I didn’t know where to start.  Prior to my accident I had no trouble dating.  I simply went to a bar and there were men everywhere.  When I went back to bars in my wheelchair, trying to meet men, I was devastated to realize men were not looking at me as they used to.  I didn’t look any different other than the fact that I was in a wheelchair.  This changed everything for me.

I quickly came to the realization that I was going to have to change how I date.  I spent several weeks researching different online dating websites and decided to take the dive into an unfamiliar world.  I asked many of my friends in wheelchairs what their experiences were like and most responses were quite negative, unfortunately. 

I had a different philosophy – the worst someone can say is no. ….”

Read the rest …

The Pitfalls of being a “Super” Communicator

I never critically stopped to ponder why being a great communicator can also lead to a very lonely existence at times.  Since I was a child, I have always been “perky” as they say and never had a problem in social settings.  I love people, communicating with them, helping them, and always trying to find a middle ground between disagreeing viewpoints.

Since my accident so many people tell me that my patience levels, communication skills, and calm demeanor are extremely admirable.  This is what I’m told to my face anyway.  I believe it’s true though as I have this odd ability to stay unusually calm in stressful situations, and be patient for far longer than I probably should be at times.  

I attribute much of this to Blue Cross and Blue Shield with the hundreds of hours I’ve spent on the phone with folks that are not particularly bright trying to get medically necessary equipment approved.  I recall this one day I spent nearly 7 hours on the phone calling back Blue Cross and Blue Shield trying to find someone who could actually help me or transfer me to the right person.  On that particular day I do recount losing my patience as I started to raise my voice, which is very unlike me.

On a serious note, and I’ve written about this on my social media before, living with a disability where you are physically dependent on other human beings to help physically take care of you each day is a blessing, and a challenge wrapped up in an emotional bow.

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Financial Solutions for Life with Paralysis

Really honored to have worked with Help, Hope, Live, a non-profit national organization dedicated to raising money for medical bills and expenses through crowdfunding.

This is a topic that is certainly not new, nor unfamiliar to many of us with disabilities. It’s so expensive to live with paralysis, especially if you have to pay everything out-of-pocket or if you’re trapped within the governmental system.

I dive into some of the challenges of navigating the financial burdens associated with life as a C6 quadriplegic.

Check out the article here:

“Financial Solutions for Life with Paralysis with Ali Ingersoll”

SPENDING A YEAR IN BED

SPENDING A YEAR IN BED:

New YouTube Video Out — Quirky Quad “Shower Talk with Ali” — UNCENSORED!

I bet you don’t know a lot of people that have spent a year in bed. Why would you? This is definitely not normal. I’ve written about it before, but I take you on my video journey with probably more information and photos then you care to look at, on what my life was like when suffering from a major pressure sore down to my tailbone in 2015.

This is a story of hardship, triumph, mental fortitude, sexy ICU Photoshoot’s, a ton of dark humor, and how I survived an extremely traumatic experience in my life.

Most people think the physical side of living in your bedroom for nearly a year looking at four walls was the most challenging part with all of the surgery, but it really was all mental!

Some of the strategies I employed in my own life have allowed me to get to where I am today and be who I am today! Leaving my professional skill sets aside, having a lived experience with disability makes so many of us profoundly capable of so much more than society and companies give us credit for.

We only need the chance to prove that we are incredibly resilient human beings, intelligent, resourceful, seriously organized, incredible at paying attention to detail, and determined to succeed more than most I would argue.

Enjoy, but I will warn you there are some graphics that might be a little bit disturbing, but are 110% real life.

Living with a spinal cord injury as a quadriplegic is no joke. Death is quite literally around every corner every day of the year. Food for thought when you think about perspective in life.

Adaptive Exercise Equipment Legislation Introduced in North Carolina

This is a super proud advocacy moment for me!

Many of you that know me, know that I spend much of my time battling health insurance companies and helping individuals get the medically necessary durable medical equipment they need to not only survive in life but to thrive.  Over the last two years I’ve taken my mission one step further to focus on having adaptive exercise equipment for long-term wheelchair users put under a “Medical Necessity” Review under Durable Medical equipment. 

Today as it stands, under Medicare and private health insurance companies, any type of exercise equipment is considered a non-covered benefit item.  This means it does not have a code and will not get approved.  Unless you have specific laws in your state, are part of the VA, or have an “in,” you’re not going to have much luck in getting approval. I know … I’ve been fighting for an adaptive rowing machine called the Vitaglide for 2 years — With no luck I might add.  Even after writing a 35 page Letter of Medical Necessity backed up by over 130 peer reviewed journal articles, which took me 4 months to research & write, I was treading water.

Despite my 24 month herculean effort I still failed.

Step 2

I then decided to take my mission to Blue Cross and Blue Shield directly.  Through a series of internal contacts and help from the North Carolina Department of Insurance I started working with multiple policy directors.  I gave speeches, had zoom calls, created videos, and more.  This was a four tedious process trying to make a financial and medical argument for preventative healthcare for adaptive exercise equipment for long-term wheelchair users to be reclassified.  Honestly, this epically failed and several months ago I received a beautiful blow-off letter from Blue Cross and Blue Shield.  No bites.  You can see the attached letter yourself.

Step 3

Have no fear.  I was working behind the scenes with my North Carolina State Senator Jay Chauduri on this very issue.  In May 2020 we finally introduced legislation trying to mandate health insurance companies to put adaptive exercise equipment for long-term wheelchair users under a medical necessity review.  Very proud of this accomplishment.  However, I’m acutely and painfully aware, I might add, the success of this bill is slim to none.  However, this creates a beginning legislative track record for me.  I am now working on different plans over the next nine months to introduce more legislation.

It’s going to be a very long road, I’ve heaved advice from so many around the country, but I’m also kind of a one woman show on this front.  I just keep pushing and pushing and pushing.  I’m ridiculously determined, pleasantly persistent, and will continue down this road is long as there is someone to listen to me.

I simply won’t stop.  I don’t know how to give up.  I never have.  As Winston Churchill famously quoted “The Definition of Success is Moving from Failure to Failure without Lack of Enthusiasm.”  I live by this quote on a daily basis living with a long-term severe physical disability.

Change can start with one person.  You may not be able to affect national change by yourself, but you can ignite that spark in others, create a movement, and while you may not accomplish what you would like to in a year or two or 10 — I have no doubt I will ignite a spark in the younger generations to continue my work for many years to come!

Online Wheelchair Dating Tips

“ONLINE WHEELCHAIR DATING TIPS”

New YouTube episode out now – My dating life in a wheelchair as a C6 quadriplegic

Talking to you today about disability dating. Specifically, online dating tips I’ve used as a woman in a wheelchair and a C6 quadriplegic. Dating is challenging no matter who you are, but online dating is even more daunting – now online dating with a disability presents its own unique set of challenges! Several years ago before I got married I went on a giant dating experiment. I was facing a major surgery for a pressure sore I had and I had about five months to go before my 11th surgery.

I decided, quite truthfully, to just try and sleep with as many men as I could to explore my disability and sexuality. I probably should not be writing about this online or making a video, but this is my reality.

It took me 5 years to gain the courage to even start dating after my accident when I broke my neck in a shallow water diving accident in 2010 leaving me paralyzed from the chest down with limited hand mobility. Throughout my dating adventures I ran into all kinds of strange people, great people, and some guys who simply were curious about what it was like to sleep and/or date a woman in a wheelchair.

I have a very quirky sense of humor, so I created an Excel spreadsheet to monitor my success for online dating. I have been through it all. Hopefully some of what I have been through you will not experience, but I was on an experiment in the name of research! specifically, disability dating research! Even through my failures and successes I learned so much. Let me take you on a journey of some of my dating mishaps and wonderful successes!

Simply Open Awards

I am consulting with a beautiful organization called Open Inclusion where I am the Lead in the United States.  Open is an organization run for and by people with disabilities where we work with large brands to make products and services more accessible through different paid research opportunities.  We are also working on a brand-new project where we partnered with the freelance organization, Fiverr, where we are working with people with disabilities to help them become their own freelancers.  So many amazing things in the advancement of inclusion!

We are also working on an incredible competition called the Simply Open Awards where people with disabilities can submit a two minute video showcasing a simple and elegant solution or ”hack” that has made their lives better.  These solutions will be shared with the world, so that we can showcase how we come up with innovative solutions to make our lives just a little bit easier.

Collaborating with the Christopher Reeve Foundation we hosted a webinar on what the Simply Open Awards are all about.  If you have a disability, or a loved one of someone with a disability, a carer, a friend, etc. you can also submit a two minute video. 

Winners will win a few thousand dollars and have the chance to go to an all-inclusive paid trip to the Zero Project Conference in Geneva in 2023!

Thank you Christopher Reeve for such an awesome webinar:

Check out my Accessible Solution:

Voluntary Hostage Situation

This is hard to write – perhaps harder to deal with than chronic debilitating nerve pain, which I suffer from daily. When you are physically disabled and require 24/7 help to take care of all of your daily needs it requires a village of caregivers, family, friends, agencies, medical professionals, etc.

I preface what I’m about to dive into by first saying each and every person in my life who helps to take care of me, paid or not, Thank you! You physically help me live my life each and every day, which is the most beautiful gift I could ever ask for. I appreciate every single human who takes time out of their lives to make my own life possible. This, in turn, allows me to spend the time advocating for others who need my help. It also affords me the opportunity to live each and every day to its fullest and advocate for systemic disability inclusion.

Now, onto what is behind the curtain of my life that many who do not live with a disability simply do not see because much of it is hidden. My life is my own, but it is not at the same time. I can’t do what I want and how I want to do it at all times.

READ the rest on PUSH LIVING MAGAZINE:

Reeve Foundation – Reducing Barriers in the Disability Community

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!

https://www.christopherreeve.org/blog/daily-dose/open-inclusion?fbclid=IwAR1yC0x25qbWrmqMghnpnaZR6T0M6blKIhKHOyHRSP-SHR1Ppg1cEsF5hOE

Excerpt:

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….”