I was born with a congenital disease called ‘Spina Bifida’. My case was said to be rare — diastematomyelia — and although I have no recollection of what my parents went through, it is astounding that I am more able-bodied than doctors expected I would be. Spina Bifida is a type of neural birth defect, where the spine and spinal cord do not close properly. It is thought that family history and lack of vitamin B-9 (folic acid) may cause Spina Bifida. However, the cause is not exactly known. There are three main types of Spina Bifida:
- Occulta — A small gap in the spine, and usually does not cause any disabilities.
- Meningocele — A sac filled with spinal fluid comes out of the opening, and can cause minor disabilities.
- Myelomeningocele — A sac filled with spinal fluid and part of the spinal cord comes out of the opening. This can cause moderate to severe disabilities, such as not being able to move the legs.
I was born with meningocele, which is minor. However, I was diagnosed with diastematomyelia – an associated condition under meningocele. My spinal cord was split in half by a bony spur. It is difficult to determine the severity of this condition during prenatal diagnosis. My parents were told that I might need to use a wheelchair, develop hydrocephalus (a buildup of cerebrospinal fluid that can cause brain damage), develop tethered cord (that would prevent normal movement of the spinal cord), or have learning disabilities as well as chronic bladder and kidney infections. As first-time parents, they still made the difficult decision to continue with the pregnancy. My first surgery was at two days old to close the opening in my back. The second surgery was at three years old to remove the bony spur. My parents were told that even if these surgeries were successful, there might be disabilities that I would develop later.
Growing up, I was slower than most kids. I had a huge scar on my back that I’ve since learnt to love. At around 11 years old, I wore a cast on my left leg. My condition resulted in the nerves in my left leg to be weaker. My foot and calf were smaller as the muscles atrophied, and I couldn’t stand on it properly. This large cast that I had to lug around in school meant that I had to wear ugly, wide shoes and couldn’t cross my legs. I often felt belittled, as teachers pitied me, I would sit on a chair unlike my peers on the floor. I would get stares and ignorant questions about this plastic cast. Some would kick it like a toy. Many pointed out the way that I walk, but I couldn’t help walking a little weird — my pelvis is tilted to accommodate my weaker leg. Every year, the teacher would celebrate the student with the most remarkable attendance — reminding me that my attendance record was never 100 per cent as I would visit the Spina Bifida clinic for checkups for my casts, my back, and legs. I realised that these experiences as a child meant that I didn’t fit in with the other kids.
How does my disability affect me today?
I am incredibly grateful for the support from The Children’s Hospital for helping me through my developing years. It was rough to experience as a child, but due to the cast on my foot, I am now able to walk without any aides. I do have minor issues, such as back pain and foot pain. I am thankful for the life I have today. It is a privilege to experience living. It’s wonderful that my body has adjusted to accommodate my shorter leg and has learned to live amongst these ‘abnormal’ dimensions. It would raise more challenges if I required a wheelchair, but I know it would still be a privilege to experience living. I’ve found it difficult to call myself disabled as an adult. My childhood experiences and accepting how my body isn’t ‘normal’ was a challenge. However, my condition affecting my body even in the smallest amount counts to impairment of my life.
During my research into my condition my mother expressed that only one doctor encouraged her to follow through with the pregnancy. She also stated that most of the doctors were in favour of abortion. This led me to think — are pro-life ideologies and not aborting a stunted foetus mutually exclusive?
The doctors provided the information to my parents. There is a ‘risk’ continuing this pregnancy. It would be considered medical malpractice if the doctors did not advise of the possibilities, and they can be taken to court for a wrongful-life claim. The ethics of letting their child into the world just for it to suffer is something my parents had to decide. If I did end up in a wheelchair, I know I would have been supported throughout my growth. I was privileged enough to be born to parents who will always support my health issues, as well as being birthed into a supportive hospital. In modern medicine, a wheelchair is the ‘cure’ to a ‘problem’ that disability imposes on a person. However, this focus on individual ‘improvement’ does not extend itself to the removal of barriers in society. Most places aren’t accessible, and getting around in this society is catered more to able-bodied people. This includes the use of wheelchairs, electric wheelchairs, walking aids and other disability aids. My support system can only do so much – being accessible is often a second thought in society.
If my parents ended up following through with the abortion, it would mean that from their perspective, the disability is bad or a burden, that it is easier to get rid of this issue altogether. Deciding to abort is ultimately their choice. In the conflict between raising a child with a disability versus aborting to have an easier life, my parents did not care about the severity of the disability and had trust in modern medicine. There are people in similar situations who would not have the capability to raise a disabled child and would not take the chance. This falls into the concept of bodily autonomy, where parents should have the choice to decide. This is not entirely their fault, although pro-life belief can be guilty of viewing disability as a problem. Society not only sees disability as bad, promoting abortion of foetuses with ‘problems’, it also does not care about making the world more accommodating to people of all disabilities.
So I beg the question, what would our world look like? If we took the energy to accommodate people with disabilities, if society strived for accessibility, and the health industry supported all babies born with disabilities and their families? Our world would look so much different. One that strives for an equitable life for all.
