February 25, 2016
Persons with Disabilities Right to Parent Act, H.3989
South Carolina Legislature
Oral Testimony by Alicia Reagan,
Member of South Carolina Spinal Cord Injury Association & Columbia South Carolina Support Group Leader
Thank you so much for this opportunity to be here speaking on behalf of parents with disabilities. My name is Alicia Reagan. I am an advocate with United Spinal Association which represents over one million individuals with spinal cord injuries and disorders, 49 chapters, 105 rehabilitation hospital members and close to 200 support groups nationwide. I am the current leader of one of those support groups that covers the Midlands area and we meet each month at HealthSouth Rehab Hospital here in Columbia. I am a motivational speaker, speaking both locally and nationally. However, my greatest title that I hold the dearest to my heart is that of being a mom.
Ever since I was a little girl, with my 20 plus baby dolls that I dressed and played with every day, I wanted to grow up and be a mom. I wanted a bunch of kids to love and raise to be leaders and make a difference in this world. I met a wonderful man who shared those same dreams with me and we married and started our family. We were blessed with 5 beautiful children and our life was like a fairy tale.
In March of 2009, I was 5 months pregnant with our last child, when I became very sick. I was in a tremendous amount of pain and thought that maybe I just needed to lay down and rest. I did not wake up until 24 hours later and upon awakening, I could not move or feel anything below my ribs. I was paralyzed. Doctors diagnosed me with Transverse Myelitis – a rare neurological disorder that happened because a virus caused swelling around my spinal cord and permanently damaged it. I was now facing the rest of my life in a wheelchair….and was a mom with 6 children.
This was not what I had planned on happening. What was my future going to be like? How in the world was I going to be a good mom to my kids? Would they be embarrassed of me? Would they take care of me or would I take care of them?
I vividly remember in the early days of paralysis when I was in a dark place and I said to my husband that I did not have all these kids to be half a woman. I would not be able to take care of them and that was not what they deserved! My husband looked at me and said, “What exactly does it take to be a good mom?” I stopped and said, “Kids need love. Lots of love.” He said, “And what has stopped that from working?” I said, “Nothing.” I realized that as long as my heart worked, my legs were not even an issue.
I went through 5 natural births and knew what it was like to raise kids. However, having a paralyzed delivery, a brand new baby and 5 other children 10 and under was not something I was prepared for. I found other moms in chairs and started on an educational journey like no other. I learned so many unique ways to carry my baby safely, hold on to children so they would not run into a street while I drove my wheelchair, grocery shop with the whole crew – you should have seen all the looks we would get! But, when you have a disability, you soon become an expert in navigating challenges so this parenting thing was just one more challenge to maneuver. It became a family game!
I have learned that my disability has been a blessing. It has taught me to be a much better mom. I am much more compassionate to my kids and their struggles. I know that life is beautiful and that every single day is a blessing and we do not take our days for granted. Needed rest time is perfect for snuggles and story books, or one-on-one private talks with my teens. My disability has made me have to think outside of the box for ways to interact with my kids. It has pushed me to activity by zip lining, being bounced at a trampoline park, and getting a hand cycle for family bike rides. It has pushed me emotionally to accept what life throws at you with a good attitude because my kids are watching me and will pattern their lives after my behaviors.
My disability has also helped my kids. They know the value of themselves because they are needed. We each play a part in the family and we all have to help each other. They know how to work hard and they know how to play hard. They know to be thankful for everything we are given because we are not guaranteed anything. They have learned compassion for those who struggle, and they have learned equality – because to them – I am just their mom. We volunteer as a family each summer at a camp for families with disabilities. This is my kids‘ favorite thing to do.
This March will be 7 years for me becoming paralyzed. A few years ago, we were talking about the different cures that may happen in the future. My kids got a clouded look in their eyes and said, “Mom, would you walk again if you could?” I said, “What would you all think about that?” They said, “We would be sad. We like you being in a chair. It makes you different than all the other parents out there and we love that. We are better people because of what has happened to you.” Those words were a balm to this mother’s soul. All of my fears in those early dark days completely melted away.
Children should never be abused and they should be taken to safety if they are. However, a disability has nothing to do with that. A wicked heart does. The laws should judge the internal evil – not the external body. This is why this law must change. My disability has been a great teacher to both me and my children, and I am thankful for it. I support the Persons with Disabilities Right to Parent Act, H.3989, for other moms and dads, for other families and for our children.
The legislation establishes requirements and safeguards in child custody, child protection and probate guardianship proceedings; prevents people with disabilities from being denied their right to parent, or have custody of, children; prohibits child placing agencies, adoption service providers and assisted reproductive technology service providers from denying disabled people access to services; requires assessments, and evaluations, of certain people with disabilities in probate and family court proceedings; requires consideration of ways to accommodate disabilities to better enable disabled persons to parent a child adequately; requires consideration of a parent’s or legal guardian’s disability to avoid the removal of the child as well as preserve or reunify a family; allows access to adaptive parenting equipment, instruction on adaptive parenting techniques, and reasonable accommodations with regard to accessing services that are available to nondisabled parents or legal guardians; and requires that reasonable efforts must be individualized based on the specific needs of the parent’s or legal guardian’s disability.
I would also like to say that United Spinal Association supports H.3989 and has the following representation in this state: one chapter, the South Carolina Spinal Cord Injury Association in Columbia; 9 support groups across the state and United Spinal Affiliate Service Providers; HealthSouth Rehabilitation Hospital in Charleston and the Roger C. Peace Rehabilitation Hospital in Greenville.
I did not end up testifying on February 25, 2016 before the South Carolina legislature because of time constraints.
However, the bill was voted in our favor and has now been voted out of the Judiciary Committee so that was a great start for us! We will keep you updated on additional hearings as the bill moves through the legislature.
Thank you for all the support and we will keep moving forward here in SC!