How Special Needs Advocacy Is becoming a ‘cliché’ !

The first thing I saw on Facebook this morning was a ‘rant’ by a special needs mother who apparently was approached by an old lady asking about the ‘syndrome’ her daughter had and if there was a problem with her face?  Being a mother of a daughter with Down syndrome, I can imagine how that must’ve enraged her and how baffled she must’ve felt. The mother tells further how she  then ‘unleashed the wrath’ of the angry parent and went on to told this 70 year old, that she is the one with the problem!

This mother told her how rude she was to approach her and say those insensitive things. She further explains how  this ignorant old lady told her that she didn’t know what this syndrome was called and she had seen a neighbour’s son with the same ‘syndrome’ but our angry mother, informed her that if she doesn’t know what it is, then it is an additional problem which is that she is uneducated and should’ve known better.  What further instigated the mother was the fact that this lady offered to buy some toys for the girl,  because as per her, after all was said, she shouldn’t have offered to make it right by offering to do something nice.

What is wrong with this incident? Nothing! If you look at the comments in this video, you’d realise that except for 3 or 4 people who said they would’ve handled it differently, everybody else is giving standing ovations and how they would do the same thing. I am kind of at a loss here. How can we be happy by giving it back to a 70 year old who made the effort to approach us and ask about the ‘syndrome’. I totally get that her words could have been better, but we all know how most of the old people don’t have these filters. My own grandmother sometimes says things which are so incorrect in today’s time and context. And I don’t even mean things she says about disability, there are few things in general which are beyond comprehension for her. Sometimes we correct her and sometimes we laugh it off. I understand we can’t be that considerate to others but still we need to recognise the fact that people of her generation have seen children with special needs being treated very differently.

I understand and trust me I do, that such words can give you a heartache but losing it out and giving it to ‘that woman’ doesn’t solve any bigger purpose here. We, parents don’t live on an island and if we have to co-exist in this society with others who don’t know much about our kids then it becomes our responsibility to educate them. By writing this I am in no way judging this mother, I know some times are more difficult than others to take it in, but what I would’ve liked  for her is  to recognise that she could’ve handled it better in the video that she posted later , so that other mothers wouldn’t do the same in this situation.

This is not a one off incident,  we parents of children with special needs keep reading or watching something where we all hold hands against the ‘outsiders’ who dare to say anything apart from ‘nice’ for our kids and I am proud of that. Take the case of ‘Richard Dawkins’ and his insensible remarks, the whole disability community gave him a lesson, he wouldn’t forget but that was different. This man could influence many with his words and it was important for us to teach him, but for a random individual,  our subsequent treatment would ascertain whether in future people would approach us or not. words can be corrected, actions can’t!

  I read another rant of a mother on a social networking site. She said how she was angered when another mother of a child with DS came over to talk to her in a market, saying she too had a son and is happy to see her family. This woman didn’t like it and told the woman in not so nice words that she is not interested in talking. Now I fail to understand how can we misjudge or misread the intentions of other special needs mothers, who may be are new mothers wanting some comfort in seeing older people with DS. The bigger concern was the comments, where other mothers told her she was right.

These are not unusual incidents. Our kids are going to schools like never before. They are becoming active members of our social systems. They are joining the work force and becoming more visible in every facet of life. While this does mean that people should get sensitive about them but at this moment of big social change, it also becomes our duty to facilitate the process by educating others and by being accommodating who don’t know any better. Don’t take sh** but don’t treat everybody who doesn’t fall in to the category of ‘political correctness’ as one. Sometimes people have good intentions but wrong words.  All the letters, blogs and articles that address ‘The mother ahead of me in the queue’ or ‘ the woman who stared at my son for too long’ might give us good likes and comments but they do divide us further from social integration in its true form. Yes, it is important to speak your mind when there is an absolute need for that but at other times, it is good to let go or educate.

There are millions of articles on ‘what should and should not be said to the parents of special needs kids’ And I too am guilty of indulging in few of these kinds but I am glad I stopped. I wanted to explore all there was to the disability than the usual clichés on ‘how a special needs parent is superior’. There are issues, bigger issues to be dealt. As I wrote in a previous article ‘how we need to stop converting the already converted’ and reach out for others here ‘ What special need parents should learn from Tom Sawyer’

When my mother was battling with cancer, I remember people used to ask all sort of questions. Some were out of concern while some were out of sheer ignorance. I still recall how one distant relative mentioned that the cancer never really goes away and how the person affected with it, doesn’t live long. Think about the person going through the illness, their families and such an insensitive comment. We told her subtly that such words are not appreciated but before that some information about the better and long lives of cancer survivors too was shared, so she would not do the same thing again!

 As a community we are powerful and strong. We know better than to be outraged. We know ‘ignorance’ because we all have been there. Today, no matter what a big advocate of disability we claim to be, we all have to agree that we were nothing better than a lot of people we call ignorant and insensitive today. This journey changed us and it took us a long time to be where we are, then how can we expect others to be as sensitive. We need to go macro and look at the bigger picture than minding the small stuff. Times are changing, people are changing and if we want to get out of this ‘island’ mentality ’ then we need to be prepared,  say better and behave better. Isn’t that what our children have taught us, to love in the worst times !

Comments

comments