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….”

Navigating Caregivers and Relationships Podcast

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;

A CRUSHING DEFEAT – BLUE CROSS AND BLUE SHIELD – CREATING A RIPPLE EFFECT

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.

Check out the Article on Push Living Magazine:

A CRUSHING DEFEAT – BLUE CROSS AND BLUE SHIELD – CREATING A RIPPLE EFFECT

Caregiving & Sexuality

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 😉

#disabilitylife #relationships #disability #sexuality #disabilityinclusion #caregiversupport #caregiver #caregiving #disabilitysexuality #openconcept #disabilitylife #perspectiveiseverything #perspectiveshift

CBS Live Interview – Healthcare Policy Change

I am truly beyond humbled and incredibly honored that CBC17 News crew in Raleigh came out to my home to do a story on Ms. Wheelchair North Carolina 2022 and the efforts many of us are making in trying to reform healthcare policy within the insurance system.

“Self Advocacy” is the single driving mission I have in my life to help others with disabilities not only survive in their life, but thrive through aiding them in getting the medically necessary equipment and services they need in their own lives!

This will always be a long-term advocacy project of mine and I will not stop until we see systemic change, but in the meantime, we need to navigate the broken system we presented with, which takes a village of disability advocates standing up for the masses!

Without Further Ado:

My Journey of Being Crowned Ms. Wheelchair North Carolina 2022

The culmination of my life’s work thus far to being crowned Ms. Wheelchair North Carolina 2022 in November 2021 is one of seemingly insurmountable obstacles, determination, support, and unrelenting determination …

… People frequently question how I have arrived to where I am today to be a professional, disability advocate, mentor, and a ferociously “Pleasantly Persistent” woman with the motto: “NO is just a starting negotiation point.”

…. Through all of this I was approached to apply to run for Ms. Wheelchair North Carolina in November, 2021. I met some incredible ladies who are now lifelong friends and I had such an amazing weekend. My specific platform for the competition was health insurance advocacy for medically necessary durable medical equipment …

… Don’t get me wrong, it’s an honor to have won this competition and I will compete in July 2022 for Nationals, but it really was and is the collaboration between individuals with disabilities that sparks my pure joy! …

…. Here is one quote I live by “Luck is the Residue of Design” – if you design your life in such a way to constantly have opportunities presented to you even if other opportunities fail, you have a higher probability of “Lucky” things happening for you.

With that, wish me luck at Nationals, but the work will not stop over the next eight months.  I have so many big plans, many of which I’m sure will lead me down unfamiliar roads, but I’m making sure I have plans A-Z in place at every turn to course correct in my own life. This is the key to lasting change and success …

Read the rest on Push Living Magazine:

ABC 11 – News Story – Ms. Wheelchair NC 2022

I’m so honored and extremely grateful for a shout out from the team, especially Diane Wilson, at abc11 News on the healthcare advocacy work I am working on in the community and my Ms. Wheelchair North Carolina 2022 title this past weekend !

https://abc11.com/ms-wheelchair-nc-2022-raleigh/11243052/

Spectrum Local TV News Story – Disability Advocate Draws Attention to Lack of Inclusive Policies

I’m super excited & honored to have been featured in a news story by Spectrum News on disability inclusion in light of recent events with the paralympian who was unable to bring her caregiver, her mother, to Tokyo.

As I always say, Disability Doesn’t Discriminate — anyone can join the club for any reason and creating a globally inclusive environment whether that be in the paralympics, employment world, your community, the government, etc. should be at the forefront of everyone’s mind!

https://spectrumlocalnews.com/nc/triangle-sandhills/news/2021/08/24/disability-advocate-draws-attention-to-lack-of-inclusive-policies