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:
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.
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;
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 😉
The absurdity of spinal cord injury with respect to the fact that being paralyzed is oftentimes the least of your challenges as compared to the endless secondary medical complications, caregiving challenges, financial burdens, to name a few, can turn a perfectly sane individual into one who is tinkering on the edge of insanity. The question remains is how do so many of us with these life altering changes cope with, what can only be described at times, as a revolving circus carnival of animals?
We each develop and build upon our own coping mechanisms as the year’s progress and as we become a little bit older and wiser in spinal cord injury years. For me, dark humor is, bar none, my number one savior to get me through most days.
Becoming a quadriplegic and being paralyzed from the chest down may appear to be the most challenging life altering event many may ever go through in their life. However, leaving aside the endless secondary complications that can arise from living a life with paralysis such as pressure sores, nerve pain, respiratory issues, osteoporosis, infections, bowel obstructions, bladder incontinence, to name a few, can, often times, pale in comparison to the financial burdens associated with living a life with paralysis. The financial hardships associated with any type of disability, one could argue, is more debilitating than the disability itself!
For the purposes of this article I’m going to be discussing some of the financial challenges and realities of living a life as a quadriplegic as opposed to a paraplegic. In general, a quadriplegic needs round-the-clock care to help with basic functions such as going to the bathroom, eating, dressing, etc. While every injury is different and there are certainly some quadriplegics who I know who live independently, I will tell you about my life in particular.
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!