I hope everyone had a wonderful relaxing summer. I was able to take a little time off and rest in August. You can see a picture of myself with Lucy the Dog having fun in Georgia. It is now September, and I feel like it is time to get back to the hard work. This month in our newsletter, we are honoring Spinal Cord Injury Awareness Month. You will read stories from Justine and some of the people she has met and worked with along the way, during her journey since her injury. 

Featured Articles

Positivity After SCI

By: Dwight Lewis

“There are days when you would be tempted to look back at the past and think about the things you wished you could do over. But there is a reason why the rearview mirror is so much smaller than the windscreen. What’s ahead is far more important than what is behind you.” - Brenda Walsh Ministry, Sharing God’s Love

“The most interesting man in the world” is what my friends would joke around with me and say. Son, brother, husband, father of two young children. Pilot, airframe and powerplant mechanic, marine seaman, operations manager. Life was full. Full of adventure and full of promise. One bite, and in a moment, it took a turn for what could be perceived as the most daunting and uncertain life ahead.

To date, I am four years into my injury. T2/T3 complete SCI level, after falling three stories high, head first. Imagine…two hundred and thirty plus pounds, 6 feet 2 inches tall, breaking through a glass window, then falling from three stories high. I should have been dead. That day, April 14^th, 2019, I was preparing that evening for a Game of Thrones binge watching session with my friends at my condo in Trincity Trinidad. We were enjoying the time together…the “lime” as we’d say in Trinidad. I recall then consuming a small cupcake that was infused with marijuana. Immediately the effects riddled my body and derailed my mind. I was out of my own control. From sitting on the couch fighting the overwhelming feeling of saying, “When will it end?” I lost it. Thereafter, of what I was told, I broke through the glass windows, fighting, almost as if I needed to escape. The next thing I remember, a day and a half later, I was in a hospital.

The prognosis was that I had a fractured skull, punctured lungs, both hands were broken, and severed spinal cord. While the hospital in Trinidad, my home country, was able to stabilize me, and they were doing their best to treat me, my family and friends were blanketing me with support. I felt hopeful the severity of my injuries led to the decision by my relatives to seek medical attention in the USA. I was airlifted to Jackson Memorial Hospital in Miami, Florida for further treatment. Here is where the journey really began. The destination is unknown. The distance is immeasurable. Life would never be the same. Mostly different because I require assistance or adaptations for most things, but also different because I see the world through new lenses.

With rigorous, consistent, and intense intervention, it is really amazing that life can go on and I am certainly grateful. Blessed beyond measure. I am back at work as an operations manager, mostly independent. Unable to fly a plane for now, but I am still able to travel to different parts of the world on my own. I drive, using hand controls, and each month I improve in areas that I had challenges in previously. Thankfully my experience has been full of hope because of my faith and belief in God, as it is nothing short of a miracle. This is the same hope and encouragement that I feel moved to share with others, especially in my home country, Trinidad and Tobago, who have had similar injuries but are not able to access all that I have received. The same encouragement and inspiration I have received from many in the various facilities in Miami. First up, Zayre, my Occupational Therapist. We met at West Gables Rehabilitation Hospital, where I began my early intervention. She got me from bed to being able to sit and exercise. After leaving West Gables, I met Sarah and Alex and Miami Physical Therapy Associates. Sarah got me standing and Alex got me walking in my RGO frame and driving a car. Next is Justine, aka “Wonder Woman.” She has an infectious smile, was in a very stylish pink wheelchair, with long, flowing black hair. She was also a patient I befriended during my stay. Very determined and driven.

For me…being very real…the most challenging experience through this ordeal is not that I can’t walk. Really, it is not being able to manage my own bowel and bladder. Though, thankfully, I am able to follow a program that works now, I still at times feel limited, as I am uncomfortable sometimes going out and eating or drinking as I like. Yes, I am unable to walk, yes I cannot manage my bowels, yes my career is uncertain, yes I may have lost some connections and relationships, and yes I had to spend a head of money and resources toward my recovery, but yes, I was able to gain more. Able to understand the great challenges with accessibility, able to recognize and work toward providing support to whomever I can in my country and wherever I go with similar challenges, able to understand firsthand the needs of persons with disabilities. I am a better person because of it. I have a greater appreciation for who is around me and I learned to seek help where needed. Humbled. I have a new vision and maximizing the growth mindset that kept me going. Focused. I have hope and continue to glance in the rearview mirror to remind me of where I was and look forward to where I want to be. Grateful. 

Superhuman Hope

By: Alex De Amicis

There is something important that everyone should know about people who have endured a spinal cord injury (SCI). They are in many ways the same person they have always been, only now, they are superhuman.

An SCI is a life-altering traumatic event that shattered the world they knew. Left in its grievous wake is a new person who must learn to live again amid a set of circumstances they likely never imagined. They must come to terms with a world that has fundamentally altered every facet of their waking lives; how they interact with those they love, how they present to new people they meet and how they take each step toward a recovery that is almost wholly shrouded in mystery. They must struggle to regain their autonomy and dignity while learning new ways to approach every challenge. They must set new goals, alter aspirations, and find new purpose. As they slowly emerge from this profound experience, one manifestation of their changed reality will be the stunning force of Hope in their life.  Hope is resilient. Hope is against all odds. Hope is defiant. Hope is angry. Hope begins each day with the recognition of restrictions and limitations and then proceeds to ask for more; more individual effort, more strength, more resources and more community support. Hope perseveres through darkness. Hope is having every reason to give up but refusing to surrender.

You want to know what is wrong with the rest of us? We lack resilience because most of us have found a way to avoid suffering. Someone who has endured an SCI injury has come through suffering, and said, "There is more for me here, I am not done yet. Things can get better." They become close friends with humility, patience, gratitude, and courage. They are in direct contact with human emotion and the human experience because they have had to embrace what few of us can bear to contemplate.

Unfortunately, they are also all too familiar with ignorance, unfounded stereotypes and lack of compassion and understanding from most of the population. As a Physical Therapist, I have been given the unique opportunity to become a part of my patients' lives. I hear more stories about interactions with the uneducated public than I can list. They tear at my heart. They make me angry. When someone takes their grandparent's Handicap tag to get a spot at the front of the doctor’s office and my patient cannot get to their much-needed appointment after getting up at dawn to make sure they are ready. I am angry. When a hostess glances at a woman in her wheelchair and then talks over her head to ask her husband if she can sit at a particular table. I am angry. When a renowned University refuses to let a man who recently became a quadriplegic take class online to finish his last semester of college. I am angry. Where is our compassion? When did we stop caring about everyone else? When did we stop putting ourselves in other people's shoes? When did we become so ignorant and indifferent?

When my patients tell me these stories, I am usually the only one so angry I am red in the face. And my patients'? They are superhuman. They encounter these injustices each day. Where my anger lies, their hope endures, and they dig in. They are resilient. They advocate for awareness in schools and send in themselves as examples, they set up advocacy presentations, they volunteer in classrooms, they create safe spaces and events for people with SCIs, they finish school, they use social media as a platform to educate their friends and family. They also walk on the beach, learn to swim, start foundations, raise funds, set goals, and create dreams. They build futures and shore them up with hope. Finally, they learn that once you choose to hope, anything and everything is possible. 

Over the last 7 years I have learned to hope. I hope for the day my patients are treated with the same kindness and respect they give. I hope for the day considerations for buildings, airplanes, outdoor spaces, events, and homes include accessibility for all. I hope for the day the public sees someone who moves differently from them as an asset to our society. I hope for the inspiring moments where my patients take back some of their autonomy and begin to command their resilient ever-beating superpower: Hope, and harness control of their lives.

Alex De Amicis is a Physical Therapist at Miami Physical Therapy Associates Inc. located at 2931 Coral Way Miami FL 33145. Feel free to reach her at alexd@miamipta.com

The View From Here

By: Justine Chichester

“Our reality is an infinite battle between what happened and what we want to remember.”

– Haruki Murakami, Best-Selling Japanese Author

Since my injury in September 2014, I struggle each year with how to properly commemorate the anniversary of my Spinal Cord Injury. Many survivors living with SCI, refer to this day as their “life day.” A celebration of a day when their new life began. For me, the approach of September 20^th brings up memories that I just don’t want to recall.

As much as I’ve progressed in my journey living with SCI, battled paralysis, fought with everything I possibly could to walk once again, and as much as I am grateful for this new life that has given me tremendous perspective and an outlook of gratitude, the likes of which I’d never known before; the memory of this day, the day I fell, the year that followed and how my life changed in an instant, brings up a lot of emotions for me. And a ton of tears.

I find it fitting that the anniversary of my injury falls in September, which is also Spinal Cord Injury Awareness Month. In 2013, the U.S. Senate passed U.S. Senate Resolution 533, which designated September as National Spinal Cord Injury Month. The spinal cord injury awareness campaign is to raise awareness of the severity of spinal cord injuries and the ongoing need for research about the injury and a cure for paralysis. Spinal Cord Injury Awareness Month is an opportunity to recognize and celebrate multiple important facts and share knowledge with others about life with a spinal cord injury. 

According to the National Spinal Cord Injury Statistical Center’s “Facts and Figures at a Glance”, there is estimated to be between 247,000 and 358,000 people living with a spinal cord injury and more than 17,900 new spinal cord injuries every year. An SCI often represents a shocking, overwhelming, isolating and traumatic event, not only for an individual but also for their family, friends, loved ones and community.

The United Spinal Association refers to spinal cord injury as, “any damage to the spinal cord, whether from trauma, disease, or a degenerative disorder. The spinal cord is a bundle of nerves that transmits messages between the brain and the rest of the body. It is protected by the spinal column, consisting of cervical, thoracic, lumbar, sacral and coccygeal vertebrae. Thirty-one pairs of spinal nerves emerge segmentally from the spinal cord and extend to the various parts of the body. After a spinal cord injury, nerves above the level of injury keep working as they did before. But below the level of injury, messages from the brain to the body may become fully or partially blocked. The higher the level at which the spinal cord damage occurs, the greater the degree of impairment.”

Throughout this month, I see many of my fellow SCI survivors sharing the details of their injuries, their personal journeys, and the knowledge they’ve gained along the way. This is a wonderful thing for our community, to be able to share what we’ve learned, so that others within the SCI community and beyond can learn and hopefully be more understanding as we go forward. It’s been so helpful to me during this 9^th anniversary of my injury to know there are others who have gone through something similar and continue to remain positive and share their knowledge. It’s honestly still a struggle for me at times, but knowing I can share that with my community truly makes all the difference.

Celebrating Progress in Air Travel

The Miami Project to Cure Paralysis celebrates a significant victory in air travel accessibility. The U.S. Department of Transportation has recently announced groundbreaking regulations mandating larger single-aisle aircraft to have wheelchair accessible lavatories in the coming years.

This momentous decision, coinciding with the 33^rd anniversary of the Americans with Disabilities Act, marks a historic step towards ensuring fundamental rights for all passengers.

“I, along with thousands of other people with disabilities, understand the frustration of transferring on and off a plane, not being able to use the restrooms, and having our wheelchairs damaged when flying. I am excited that in the future, passengers with disabilities will be able to address their basic needs with dignity. This achievement has been hard-fought, requiring years of advocacy to make this possible,” said Marc A. Buoniconti.

The adoption of this new rule will open flying to more people with disabilities than ever before.

- The Miami Project to Cure Paralysis, August 2023

For more information, click here.

We have discussed many aspects of domestic violence and sexual assault in my articles. This month, I want to address the effects of being exposed to domestic violence as children who are witnesses.

Domestic violence takes many forms, including chronic arguing, yelling, intimidation, threats, serious injury and threats of murder. It is any pattern of behavior that is seeking destructive control.

The Centers for Disease Control and Prevention (CDC) have reported that in homes where violence between partners occurs, there is a 45% to 60% chance of co-occurring child abuse.

They found that even when children are not physically attacked, children witness 68% to 80% of domestic violence assaults.

Domestic violence takes its toll on the children in the home. Children are not just innocent bystanders but are also victims.  

Here are some of the effects:

Caregivers who experience domestic violence are themselves traumatized and many times emotionally unavailable and unresponsive to the needs of their children.

Children often feel fear of harm, abandonment, guilt, and shame.

Studies show that children who witness domestic violence experience far greater incidents of insomnia, bed wetting, verbal, motor and cognitive issues, depression and anxiety.

They may experience difficulty with anger management, withdrawal and poor social relationships.

Younger children exhibit higher levels of psychological distress than older, more mature children. (Brown and Bzostek, 2003) 

It is difficult for those outside a family to know what is going on and to know how to intervene, but there is some good news. There are protective factors that can mitigate the impact of abuse on children. The most important is having safe and supportive relationships with at least one influential adult. (Carlson 2000, Edelson 2011, Hughes)

Children who witness fewer incidents of violence and have positive interactions with caregivers and others, may be less impacted. As a society we have built a system of care for the adult victims of domestic violence and while we have and do speak about children, I believe we can do more.

There are ways we can intervene within our families, schools and communities, to create opportunities for children, who witnessed abuse, to receive the interventions and support they need to heal. 

The first step is recognizing the problem and that we are doing. Now we must work together to create programming that targets the needs of child witnesses to abuse. 

Helping People with Disabilities Communicate with First Responders.

This project has several components:

• We make customized wallet cards for people living with intellectual/developmental disabilities and Autism.

• We make customized caregiver wallet cards for caregivers of people living with disabilities.

• We have an online training program for law enforcement.

• We have a program for schools, parks programs, or community organizations.

Please click the link below to learn more about this project and to order your own customized wallet card or caregiver card.

If you have any questions, please email Debbie at debbie@justidigit.org.

Subscribe to the Florida Access Coalition Mailing List to get the Most Updated Information!

Employment support for people with disabilities

If you are a person with a disability and pursuing employment, you are not alone. You can find many agencies providing employment support and help you to reach your vocational goal.

Vocational Rehabilitation (VR)

Is a federal-state program that helps people who have physical or mental disabilities get or keep a job. VR is committed to helping people with disabilities find meaningful careers.

Examples of VR Services:

•         Medical and Psychological Assessment

•         Vocational Evaluation and Planning

•         Career Counseling and Guidance

•         Training and Education After High School

•         Job-Site Assessment and Accommodations

•         Job Placement

•         Job Coaching

•         On-the-Job Training

•         Supported Employment

•         Assistive Technology and Devices

•         Time-Limited Medical and/or Psychological Treatment

For more information visit Vocational Rehabilitation website http://www.rehabworks.org/

Centers for Independent Living

Services are provided to maximize the leadership, empowerment, independence and productivity of individuals with disabilities. The services are intended to lead to the integration and full inclusion of individuals with disabilities into mainstream American society. A CIL is a consumer-controlled, not-for-profit local organization which provides at least four core independent living services. There are 16 CILs in Florida. To find a CIL close to you.

Visit http://www.ilru.org/projects/cil-net/cil-center-and-association-directory-results/FL

Centers for Independent Living – Florida Independent Living Council (floridasilc.org)

Find a CIL – FACIL (floridacils.org)

Employment Networks 

Employment networks are available to provide vocational training, job readiness training, resume writing classes, and other vocational services to SSDI and SSI beneficiaries. Some ENs specialize in providing services only to people with specific disabilities (such as developmental disabilities), while others serve all beneficiaries irrespective of the nature of their disabilities. Some ENs are businesses that rely on the EN system as a means to employ people with disabilities for their own businesses. These ENs are alternatives to the state departments of vocational rehabilitation. For a list of ENs doing business in your area, Find Help - Ticket to Work - Social Security (ssa.gov)

Disability Program Navigator Initiative

The Disability Program Navigator Initiative helps CareerSource Florida centers improve employability and increase career opportunities available to job seekers with disabilities.

Major Objectives of the Disability Program Navigator Initiative

• Increase employment and self-sufficiency for social security beneficiaries and individuals with disabilities; and help individuals understand how earnings may affect their social security benefits and other support programs.
• Create systemic change to transform the culture of how CareerSource Florida centers serve customers with disabilities.
• Facilitate linkages to the employer community so individuals with disabilities may access programs and services. For more information please visit Disability Program Navigator (DPN) Initiative - (careersourcesouthwestflorida.com)

Other Important Resources

Disability Rights Florida: advocates for SSA beneficiaries pursuing employment

Services to Individuals

•         Information and referrals

•         Self-advocacy support

•         Technical assistance

•         Investigations into complaints of abuse, neglect and rights violations

•         Dispute resolution support

•         Negotiation and mediation support

•         Advocacy services

For more information check their website http://www.disabilityrightsflorida.org/

The Job Accommodation Network (JAN)

JAN is the leading source of free, expert, and confidential guidance on workplace accommodations and disability employment issues. Working toward practical solutions that benefit both employer and employee, JAN helps people with disabilities enhance their employability, and shows employers how to capitalize on the value and talent that people with disabilities add to the workplace. Check their website: https://askjan.org/links/about.htm

Lesly Quintanilla Lopez

Access The Vote Florida (ATVFL) is a state chapter of AAPD’s REVUP Campaign. REV UP stands for: Register! Educate! Vote! Use your Power!

The chapter is a statewide coalition of organizations and self-advocates that are working to raise awareness about issues that impact persons with disabilities, encourage people with disabilities to participate in the voting process, and educate elected officials on issues important to persons with disabilities.

Email Olivia at oliviab@drflorida.org to get on our mailing list.

Vote-by-Mail and How to get an Accessible Vote-by-Mail Ballot

By: Deborah Dietz

At the end of 2022, all requests for vote-by-mail ballots expired. This was because of a new state law passed in 2021.

What this means is that if you want to continue to vote-by-mail you need to submit a new request to the elections department.

In Florida, if you are a voter with a qualified disability under the Americans with Disabilities Act (ADA) you have the option to receive an accessible vote by mail ballot by email. This option allows voters to cast their ballot independently without the assistance of another person.

Click here to request a vote-by-mail ballot in Miami-Dade County.

Click here to request an accessible vote-by-mail ballot in Miami-Dade County.

*NOTE: Requesting the accessible ballot will prompt the paper and electronic portions to be sent to the voter.

If you have any questions, please contact the Miami-Dade County Election’s Department at soedade@miamidade.gov or 305.499.8509 with any questions you might have regarding this program.

Voters who have questions should email votebymail@miamidade.gov or call 305.499.8444.

City of Coral Gables Events

If you have any questions, please email the City at PlayForAll@coralgables.com

988 is now active across the United States.

988 has been designated as the new three-digit dialing code that will route callers to the National Suicide Prevention Lifeline (now known as the 988 Suicide & Crisis Lifeline) and is now active across the United States.

When people call, text, or chat 988, they will be connected to trained counselors that are part of the existing Lifeline network. These trained counselors will listen, understand how their problems are affecting them, provide support, and connect them to resources if necessary.

This new, shorter phone number will make it easier for people to remember and access mental health crisis services.

(Please note, the previous 1-800-273-TALK (8255) number will continue to function indefinitely.)

LEARN MORE

Litigation Update:

Disability Independence Group’s Litigation Department closed in

2022.

If you have a disability legal question, you can contact Professor Matthew Dietz at the Disability Advocacy and Inclusion Law (DIAL) Clinic at Nova Southeastern University Law School. His email is: mdietz@nova.edu.

If you have a disability education issue, such as an IEP or Exceptional Student Education, you can contact Stephanie Langer at Langer Law, PA. Her email is: helpline@langerlawpa.com.

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