I parent a multi-exceptional teen with neurofibromatosis and several other issues. My question is about helping others to understand and more readily accept people with NF who have very visible issues. Some people with NF have encountered outright rudeness, been shunned, been made fun of, etc. My teen will probably be someone very visibly affected by NF in adulthood.
There are two parts to your question. The first is about changing peoples views to others who look different. The second is about handling stares, rudeness and hostility to your own child.
Organizations such as the Neurofibromatosis Society are great because they advocate for and support people with disabilities. One of their efforts is to reduce the very real stigma of having a visible disability.
The best way to change the general public’s view of those who are different is positive exposure. That is having people who look different out in the public in as many positive ways as possible. Television and the movies are important vehicles for this. So having people who have visible disabilities playing positive roles even if they have facial deformities is important. Leading roles would be great but just putting the full range of humanity into small roles or crowd scenes so that the movies and TV look like all of us is important. I would also like to see evil people depicted more realistically. The vast majority of evil people do not have visible deformities in the real world. Movies and television still promote stereotypes linking evil with visible deformities.
There has been some progress in some areas. For example Dove, the beauty care company has advertisements with less than “perfect” women. I would like them to go even further.
Each of us can urge the companies that produce our favourite products to use people with many different disabilities in their advertising. Write to the President of the company.
On an individual level, there are also possibilities. Depending on your child’s level of cognitive ability, you can explain that there are a lot of people who behave poorly. It may be because they are rude, mean or afraid. It may be because their parents didn’t teach them to be polite and they are curious.
Ignoring stares and rudeness in public is probably the best strategy. It is hard not to be intimidated by such rudeness but some children with visible disabilities are great at this.
I knew of one mother who had small cards printed up that explained her child’s condition and pointed out that staring, comments or pointing was a form of rudeness. She handed them out to people who did this in public to her child. One has to be careful about confronting rude people.
If it occurs in a school or work situation it should be treated as any other form of bullying and reported to the school or work authorities immediately.
Any pushing, hitting or threats should be documented and reported to the police.
This is a difficult problem, perhaps some of our readers have suggestions.
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