Get-hooked November 22, 2018
Can you not say these things to a parent with a disabled child?
The one experience common to all parents of children with disabilities is the truckloads of advice and tips they get from people about their children, parenting styles, life choices and what lies ahead. This is offered randomly by perfect strangers, well-meaning friends as well as family members, who think it perfectly fine to make probing, personal and often downright insensitive comments on various aspects of their lives.
These are comments most parents politely acknowledge unless they are outright rude. That does not mean they do not hurt or offend. So, today we are putting down some examples of things not to say to parents with disabled kids.
- “What is wrong with him/her?” or “He/she looks so normal”
This comments comes in many forms, all of them sound offensive. “Another variation of this is ‘Why is he behaving like this?”, says Gopi Ramakrishnan, co-founder of Special Child Assistance Network (SCAN), a Chennai-based support network of families with children with disabilities.
This is a question parents get asked hundreds of times. The other commonly asked question is, ‘have you tried different therapies and cures’. As if parents are sitting around doing nothing. And god forbid if the child has a meltdown, then the parents get asked why are you not doing something. – Gopi Ramakrishnan, Co-founder, SCAN
- He/she looks fine to me” or “You would never know to look at her”.
This is a comment that is often offered to comfort parents, but it is never a good idea to downplay a child’s challenges by suggesting they don’t really exist. Recognize the fact that years of therapy have gone into the child looking fine and did not happen overnight.
- “It’s all karma”.
This is a remark Chennai parent Sangeeta Devraj would hear all the time in the early years when her daughter Samyuktha was diagnosed with autism. “People, and by this I mean acquaintances and relatives, would even tell me to get our horoscopes checked to see if there was some issue with the family history! Such comments would drive me to tears”. Devraj says she still hears such comments, but does not let it get to her.
The stigma around disability is something parents are confronted with time and again. Dr Neelam Sodhi, parent to a child with cerebral palsy and founder of Aashirwad, an NGO in Ludhiana that supports children with disabilities, recalls one such instance at a gurdwara. “We were celebrating an opportunity to take the children from our organization out and we found that visitors to the gurdwara were touching their feet to seek blessings that they never have a child with a disability!”.
- “You must have done something wrong”
Why would anyone say this to a parent, right? And yet this is something that is casually stated all too often as if any parent would have caused their child to be disabled. “The dumbest thing I have heard is that you must have done something in your past life,” says Dr Sodhi. Devraj too has encountered comments like these. “I have been told Samyuktha has autism because perhaps I did not spend enough time with her, and these are remarks from educated people!”
- “What will happen to her in the future?”
Every parent is concerned about their child’s future, whether or not the he/she has a disability. Offering suggestions or painting a worst case scenario is not just unwelcome but insensitive. “I have been offered suggestions like, ‘Maybe you should take Samyuktha’s uterus out after she gets her periods so nothing untoward happens,’ or ‘Who will marry her or look after her in the future,'” recalls Devraj. “Honestly, I feel like slapping people who speak like this.”
- “Are you retarded?” or “I almost had a stroke”
In general, be careful about your audience when you make certain comments because statements like the above can really hurt and offend a parent whose child did in fact have a stroke. So be aware of the people around you, and that’s good advice really for any occasion.
Anupama Bakhshi, who has a son with autism, says “even the supposed to be well-meaning and well-intended statements can be negative, demoralizing and even devastating. So best advice that goes out to the mainstream world is ”Please refrain from advice!” We don’t, necessarily, want you to walk in our steps, be in our space and live our challenges but please let us be. We have the roadmaps to our journeys in place. And even if we don’t have them, we are fine with routing and rerouting! We do not cross the same junctures, the same highlighted points and the same paths as you do but we will get there. Your just being there or saying that you understand our journeys will be a reassuring and much appreciated nudge. And accepting the special needs individuals in social spaces will be the best support we can ask for and we do seek it all the time.”
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