Facial Difference (Facial Disfigurement) as a Disability in South Africa
An interesting topic which is related to facial difference conditions, is the question of when it is classed as a disability.
As a patient and like many others, I found myself wondering about this question a lot during my reconstruction and I spent quite some time researching it on the internet to see what the general global consensus was. I didn’t really find one which was clear to me.It seems that when you speak to other patients, a very common opinion is that they don’t want to be classed as “disabled”. Some people believed it was bad enough to live with a disfigurement which limited them in daily duties enough without having an additional label attached. My thoughts were the same really, because I’ve always tried to work around my disfigurement as though it wasn’t an obstacle and never wanted to be seen as a “charity case”. So I related.
What has crossed my mind though in time, was that attached to the “disability label”, there are certain rights?
I have a 4 year old son who has a learning disability called SPD (Sensory Processing Disorder). This is a neurological disorder on the autism spectrum which has left his sensory system underdeveloped. I’ve been told by his school, that we are entitled to certain tax savings which help me a lot in terms of his medical and educational costs. Then I thought, as an example, “I wonder what parents of children with facial differences are entitled to?”
If it’s not clearly defined as to when it is a disability, how can a patient automatically be aware of their rights and investigate? This answer wasn’t easy to find online.
I thought about my 8 year old friend, Kait and her brave mom in Cape Town, who has facial Scleroderma. Here is a good example of a little girl who is attending a normal school, trying to live a normal life and who doesn’t want to have a negative label like “disabled”, but spends a huge part of her life in and out of hospitals and fighting discrimination about her different appearance.
Who wakes up every morning and sees this rare disease eating away at her little face. If it was my child, I could honestly say the pressures of being in and out of medical care alone are incredibly tolling, never mind the physical illness and the emotional strength to deal with physical discrimination. Her mom unaware of whether she had rights or not, just like many others.
What many people don’t realise is how difficult it can be to face the world with a disfigurement. Some of us would cringe at the thought of leaving the house with a blemish or when we get a few more wrinkles. Some facial differences can be so severe, a facial prosthesis must be worn to cover up gaps in the face. In the case of a facial transplant patient, sometimes all the features are completely missing or disfigured. Some cases have been caused by trivial circumstances like dog bites in the face. It can happen to anyone of us at any time and is not a condition which is only hereditary. Some are acquired later in life.
Here is a video of a facial transplant patient, c/o Brigham & Woman’s Hospital, Boston.
Facial difference is such an enormous issue which none of us are aware of because we don’t see it enough. It has certain stigma’s attached to it which is quite ridiculous considering none of us are perfect. However, it doesn’t change the fact that having a facial difference is one of the hardest challenges in the world. People are not educated enough. In my case, my facial difference appearance after 9 years of surgery is acceptable, but I fight back on appearance prejudice daily. Imagine a little girl like Kait at 8 years old. Surgery can’t correct her condition.
I keep referring back to an old movie we all enjoyed in our youth (1985), the Mask. This was filmed over 28 years ago and yet only recently has facial disfigurement been recognized as a major issue. he had a rare condition called Lionitis.
Something else that went through my mind was, what would happen if you had a car accident and lost a portion of your face, could you claim for any disability insurance? Is it defined at the insurance companies? Loss of a part of the facial area? What about in the case of a burn victim? I have come across some companies who advertise this, further investigation is probably necessary.
As a patient, this would also be something which plays a massive role in managing my condition. The ultimate question “Am I disabled?” I wonder if there must be a fine line here between when a disfigurement is classed as a disability and when it isn’t. Because, some conditions are correctable by surgery and others are not.
I made a visit to one of the Associations for the Physically Disabled, Greater Johannesburg to see if they had any ideas. It seems after discussing this issue them that South Africa could definitely help these patients by reviewing this grey area so that it is more clearly defined.
I did find this online South African publication which was quite useful: (With ref. to page 7 & 22).
I wasn’t keen on the choice of facial difference imagery used here, which I felt was inappropriate on the delicate topic in question, but the information was great.
Perhaps inclusion whether a condition is a disability in a patient resource website is a good idea?
I believe it is important for a patient to be clear on this aspect.
I hope to be able to learn more so that I know exactly what my rights are in South Africa and how that helps me as a patient.
Some amazing work regarding this is being done by Changing Faces in the U.K. and by C.E.O Mr. James Partridge.
Disability and Equality – Legislation and your school
Equality and Human Rights Commission formal inquiry into disability related harassment
Information and insight which can be added to this post would be valuable.