advocacy, Current events, disability, Disability Employment, Motivation, SCI awareness, spinal cord disorder, spinal cord injury

Virtual Abilities Experience 2020

The Abilities Expo is an event that I have wanted to attend forever but travel and time always came into play. This year has been different in so many ways and I was finally able to attend because like many other aspects of our lives… it was virtual. I had a great experience with the Abilities Virtual Experience that was held November 20-22, 2020. It was organized in a way that allowed early access to the exhibit hall, workshops, events, product demonstrations, speakers, and live host schedule so I could plan ahead of time and save everything to my personal agenda.

David Korse- Abilities Expo CEO

I spent a majority of my time in the exhibit hall, which was extremely informative, fun, and very easy to navigate. I already knew some specific companies that I wanted to visit, but it also allowed an option to search the exhibit hall by means of keywords, categories, and an alphabetical directory. An aspect of the exhibit hall that I found extremely beneficial was all of the resources that were available after you selected any of the companies or organizations. Many of them offered brochures, a video library, a listing of the staff, and an option to chat with a representative from that specific booth. I was impressed and I did not leave any of the booths at the exhibit hall feeling like I could not find information that I was looking for.

I also spent some time on the live host channel, which was hosted by Paul Amadeus Lane, who is a radio personality, tech vlogger, and an Abilities Expo ambassador. I watched a great interview with the President of Permobil, Chuck Witkowski. It was a very informative session where new product launches and upcoming technologies were discussed. The live host channel also had various dance performances, comedy routines, and musical numbers.

Paul Amadeus Lane- Abilities Virtual Experience live host

Last but not least, another great aspect of this event is that everything was still available to access until December 13. I have taken advantage of this option and I revisited the Abilities Virtual website to watch events that I was unable to watch live. Overall, the entire experience was fun, interactive, and extremely informative. Also, it is an event that I would not have been able to attend unless it was offered virtually. All of these great resources were available right at my fingertips! One of the many things that I have learned about this amazing community of people who have a SCI/D, is that we know how to adapt to an ever changing and challenging world, and I am extremely proud to be a part of that community. The Virtual Abilities Expo reiterates this because they adapted and created an event that could reach an even wider audience. My suggestion for anyone that attends any future Virtual Abilities Expos such as this is to register as soon as you can, watch the walk-through video, and check everything out ahead of time in order to create a schedule specific to what you are looking for… and have fun!

Click HERE to see dates for upcoming Abilities Expos!

advocacy, disability, Disability Employment, NDEAM, spinal cord disorder, spinal cord injury

National Disability Employment Awareness Month: My Employment Journey

Let’s start with a number… 52.

No, it is not my age.

No, it is not how many years my parents have been married.

No, it is not my lucky number.

Yes, it is the number of job applications I have filled out over a period of two months.

October is National Disability Employment Awareness Month (NDEAM), and I wanted to share some of my employment journey experiences in order to raise awareness and help others see that there is a light at the end of the tunnel for those of us with a disability to find employment. I just recently started my position at the United Spinal Association as the Grassroots Advocacy Manager. It is a perfect fit for me. It is something I am passionate about. I get to work from my fully accessible home office, and I feel like I am truly helping others and making a difference. I strongly believe that this opportunity was presented to me due to the culmination of many factors.

Working at United Spinal was not even in my radar a year ago as I was clicking my way through multiple job sites, writing cover letters, tweaking my resume, and doing everything I could to get it past that first step and actually into the hands of an employer. I used career counseling, job placement companies, networking, and career services through my college. I was struggling with finding employment not because I did not have the proper education, work ethic, or skills. I was struggling because I am a C5 quadriplegic and at the time of my search for employment, working from home was considered to be a burden for many companies.

I know it is a difficult task for anyone to find and get hired into his or her desired career, because I have experienced the process pre- and post-wheelchair. Both are challenging, stressful, frustrating, but in the end hopefully rewarding. I quickly learned that as a C5 quadriplegic, I had a few more hurdles to jump over despite the fact that my education and work experience qualifications did not change. Besides finding a career that was a good fit, I had to now consider transportation, nursing for any of my needs throughout the day, accessibility in regards to equipment for work, assistance with typical duties, avoiding health issues such as pressure sores from sitting in one position for an entire work day, all the way down to who would help me eat my lunch! The best option for me was part-time remote work from my home office.

Working remotely from my home office provides an environment that is comfortable for me and fully accessible to anything I need.

After starting my work at United Spinal Association, I quickly found out about all of the incredible resources that are available for those with disabilities who are seeking employment. United Spinal’s Pathways to Employment (PTE) offers webinars, podcasts, various resources specific to people with spinal cord injuries and disorders (SCI/D), and a video series that covers various aspects of finding and landing a job that is a great fit for you. The Pathways to Employment program also provides guidance for employers in order to ensure that people with disabilities are properly represented in their workforce.

Another key resource is the Office of Disability Employment Policy (ODEP) where you can find employment assistance and resources. There you can also find the link to the Campaign for Disability Employment titled What can YOU do? This initiative highlights what people with disabilities can do if they are simply given the opportunity. The “Working Works” PSA Campaign is part of this initiative, and United Spinal Association is represented in that PSA by one of our own members, Chanelle Wimbish of Maryland..

Chanelle Wimbish has worked as a research analyst at Social & Scientific Systems (SSS) since 2008.

The United Spinal family is a community that is truly passionate about helping those with disabilities find employment or return to work after an injury or illness. This is a community that has given me the opportunity to work in a field that I am truly passionate about. This is a community that I am extremely proud to have joined. I want those with a disability to know that there are opportunities out there for you to meaningfully use your talents and skills. I was offered my position at United Spinal by sticking to what I am passionate about… writing, speaking, and being a voice for those who do not have one. If you continue to use all the resources available to you, continue networking, continue working hard, and continue believing in yourself and everything you are capable of, you will find those opportunities. This world is starting to understand the importance of hiring people with disabilities, the skills we bring to the table, and the unique insight we can provide to improve outreach and accessibility to the working world.

That is the light at the end of the tunnel for me, and as we all keep pushing forward that light will continue to get brighter.

advocacy, black lives matter, Current events, Death, discrimination, Family, inequality, Life, Loss, Love, racism

I Write…

When I am hurting, or mad, or confused… I write.

When I have something important to say… I write.

When my heart is broken… I write. 

When I want to help, but I feel helpless… I write. 

I write. It is what I do. 

This time it is different. I have been sitting back and taking it all in, struggling to find the right words. I wanted to understand before I shared my words with the world, but I have realized that I will never fully understand. I have decided that I cannot just sit in the background being fearful that my words will not matter. So, it is time for me to do what I do… I write.

The driving force that has given me the courage to express my feelings, my fears, and my disappointment in my fellow human beings is my brother, Eric… my sister-in-law, Monica, and my nephew, Kobe. They are my family.

I have been blessed with a life in which the color of my skin does not cause others to assume I am lesser than, judge my actions or abilities, or bring a feeling of fear or danger… but I have witnessed it. I have witnessed my brother, who was bi-racial, struggle in a world that did not treat him fairly. From the moment I saw Eric at the adoption agency, I knew he was my brother. I did not see color. I saw a beautiful little human who gave me the title of big sister… a title I did not take lightly. Eric grew up under the same roof as me and our older brother. Eric had the same last name as me and our older brother. Eric was loved and cared for just as my brother and I were, but Eric was treated differently by the outside world simply because of the color of his skin. Many people were blinded by color and they were unwilling and unable to see the Eric I knew, that was tucked away under a hard exterior that he was forced to build for protection and self preservation.

    The Eric I knew, still at the age of 26, loved hugs from our Mom. The Eric I knew had the biggest heart. The Eric I knew was an amazing father. The Eric I knew was a hard worker. The Eric I knew hung his conference metal that he won in track over my hospital bed while I was in the ICU just so I would know he was with me. The Eric I knew loved family. The Eric I knew taught me about life, love, and acceptance. The Eric I knew would have given me the world if I needed him to. The Eric I knew made mistakes, but guess what… So have I! I feel sorry for everyone that did not get to know this Eric. 

I feel really sorry for those who had tunnel vision and all they saw of Eric was that his skin was a different color. You missed out on knowing a loving and strong human being. His life mattered to me, and his death feels like a missing piece of our family puzzle. I cannot help but to feel like I could have been better for him, or stood up for him more while he was here. So, this is why I have decided that I cannot hide back in a corner, behind my white skin, and be afraid of what others may think or feel after reading my words. I strive to do right for Eric… for Monica… for Kobe… for anyone who has to live in fear and go to battle every day because of the color of his or her skin, anyone who is unfairly misjudged, and anyone who has been directly affected by racism. I will NEVER say that I know how it feels, because I do not know. All I can do is stand in solidarity, I can listen, and I can offer my continual support in any possible way that I can.

Kobe, Eric, and Monica

I pray for George Floyd’s family, and all of the families who have gone through and are going through unexplainable losses. 

I pray for our police officers who wear their badges for the right reasons, and who are willing to give their lives for those who they do not know. 

I pray that human beings start seeing each other as human beings no matter skin color, culture, gender, or sexual orientation. 

I pray that my nephew can grow up in a world that gives him a fighting chance. 

I pray that Eric knows that I am so proud of him and that I wish I could have done so much more for him. 

I pray that people realize that nobody is going to fix this for us. It starts with each and every one of us and our responsibility to be there for one another. 

I pray that the peaceful protesters continue to be supported and that they are heard loud and clear.

Our country and our world is a mess right now.

Our country and our world has lost its morals.

I ask that you find what it is that you can do to start making a change.

I cannot fix the world, but I can try… I can write.

advocacy, Current events, disability, Home healthcare, Life, Motivation, SCI awareness, spinal cord disorder, spinal cord injury

HEROES Act…

I have not had the hiccups for 15 years… Not once! This is the absolute truth, but there is so much more to this blog than my ability to eat spicy food and drink a carbonated anything without a single hiccup.

I know… I get it… Not another write up about COVID-19. I am asking you to give this one a chance, because this one is different. So, if you are still with me… Thank you.

Right now it is common knowledge that the risk factors for catching this virus are much higher for those who are 60 years of age and over, and also for those who or immunosuppressed. Along with these risk factor groups, I want to talk about the population of people with spinal cord injuries/disabilities (SCI/D). If we look just at the United States, the estimated number of people with SCI is approximately 294,000. That is equivalent to about 54 cases per 1 million people (“Spinal Cord Injuries,” 2020).

I am passionate about the SCI/D population, because I am one of those 294,000, and I have a voice to help, to be an advocate, and to raise awareness. COVID-19 is a virus that affects the lungs, which makes it extremely dangerous for those with spinal cord injuries, especially when the level of injury is higher at the cervical level. My level of injury is diagnosed as C5 incomplete. I am not on a ventilator, and I consider myself lucky, but my specific injury has affected my body from my chest and down.

Now, to answer the question of why this makes people with SCI/D more susceptible…

I have been navigating through life in my wheelchair, without hiccupping, for 15 years. I see the lack of having to deal with hiccups as a silver lining, but it also means that I do not have the capability to cough or clear my lungs without assistance due to the partial paralysis of my diaphragm and core muscles. In order to have the full potential to breathe and cough, it takes the combined teamwork of three muscle “groups” in your body… The intercostal muscles (between ribs), the abdominal muscles, and the diaphragm which takes on most of the work. So, this inability to have full respirations or powerful and effective coughs is a major cause of immunosuppression in anyone who has a SCI/D. Some of the other causes of immunosuppression that are common complications that go along with spinal cord injuries are diabetes, urinary tract infections, and open pressure injuries. All of these provide an open invitation for viruses and bacteria to enter the body. As a C5 quadriplegic, I have dealt and still deal with some of these complications, and it by no means is a quick fix. Now I am sharing this information not only to raise awareness, but I will be the first to admit that I knew nothing about SCI/D before my diving accident. I want the level of awareness to change and I am passionate about finding ways to make that change.

 

united spinal logo

 

This brings me to the topic of how you can TAKE ACTION, and help bring change. The United Spinal Association is an amazing organization that is one of the major leaders in fighting to protect the health and safety of disabled veterans, wheelchair users, and anyone with a spinal cord injury or disorder. The support and resources they provide are extremely important during times like now, and there are various ways that you can reach out for support or get your hands on some valuable resources.

United Spinal Cord Resource Center:

(800) 962-9629

www.unitedspinal.org/ask-us/

One very simple way that you can take action is by visiting the online United Spinal Action Center and offer your support for the important provisions of the Health and Economic Recovery Omnibus Emergency Solutions Act (HEROES Act). Even though it is unlikely that this bill will pass through the Senate, it is extremely important that your Representatives and Senators are aware of the provisions that the United Spinal Association supports in future consideration of this legislation that can directly affect those with SCI/D, their families, and their caretakers.

You can visit the action center and truly help make a difference by a few simple clicks of the mouse, sharing this information with others, and offering your support in any way possible…

  1. Drop in at www.unitedspinal.org/action-center/
  2. Scroll down to COVID-19 Action Alerts
  3. Click on “Act Now” under “Support Important Provisions of the HEROES Act.”
  4. Take a few minutes to read through the six provisions that United Spinal supports, fill out your information, and click “Send Message.”
  5. Smile… because you are making a difference.

 

IMG_7295

 

Information that is found in this blog and important information related to COVID-19 and SCI/D can be found at the following locations:

 

United Spinal Association / COVID-19 Advocacy Resources & Guidance  

https://unitedspinal.org/covid-19-advocacy-resources-and-guidance/

 

Christopher & Dana Reeve Foundation / Posts in COVID-19

https://www.christopherreeve.org/blog/tags/covid-19

 

National Spinal Cord Injury Statistical Center / Spinal Cord Injury Facts and Figures at a Glance

https://www.nscisc.uab.edu/Public/Facts%20and%20Figures%202020.pdf

 

Data Source:

National Spinal Cord Injury Statistical Center. (2020). Spinal cord injury facts and figures 

      at a glance. https://www.nscisc.uab.edu/Public/Facts%20and%20Figures%202020.pdf