Tuesday, January 15, 2019

The regressive mindset.

I couldn’t be prouder of Mo who has a 3-9 pm job at McDonald's as their drive-thru cashier. Mo is fulfilling a dream that began when he was 11 years old and was actualized at 21 years after loads of hard work coupled with immense anxiety and self-doubt brought about by his autism. “You did it!” I tell Mo, but it does not end there because Mo's dream is already growing bigger as he continues to dream of more.

However, this is not what I really want to talk about here. It is what my second born Murad, who is 19 years old, said to me the other day. He shared that his supervisor at a local concern here in Singapore asked him how he felt about having an older brother with special needs and how he (Murad) was surprised, almost offended that such a question would even be asked. “As if people with special needs are not like you or me!” Murad stated. Quite honestly, had I been asked the same question about having a child with special needs, I don’t think I would have shared Murad's reaction, in fact, I would have expected the question and then gone on to talk about my journey and so on. Nevertheless, Murad is a child who, by virtue of being raised in a home where differences are not labelled as ‘inferior’ or considered an ‘affliction’, rather as challenges that must be dealt with and overcome, has grown up without prejudice against people who are differently able. I was delighted by Murad's comment that day and felt reassured that my husband and I had managed to raise our children without the preconceptions that he and I had grown up with.

Ready to go to work!
I am in no way downplaying the hard work and the struggles of caregivers of differently abled children and for that matter the carryover of the challenges to the siblings, but it is the perception of these challenges that precipitate stigma, discrimination and bias. This perception is mediated through language, beliefs, attitudes, government policies and so on.

As an example take our everyday language through which we might be unsuspectingly passing on messages that can have long-term ramifications for future generations. With regards to how we refer to differently abled individuals, I found an interesting blog that talks about whether to call a person with autism 'autistic' or 'someone with autism' https://www.parents.com/health/special-needs-now/should-we-say-with-autism-or-autistic-heres-why-it-matters/. Though this may not come across as a critical debate, it begs consideration and mindfulness about how we may be influencing people around us.

Back in Pakistan, I continue to hear words like ‘retarded’ and ‘pagal’ or ‘mad’ referring to individuals with special needs or mental health issues and it irks me immensely. Whereas earlier I would reprimand the use of such discriminatory language, I have changed my stance to bringing awareness to the sources of these deep-rooted biases and taboos that have nurtured centuries of regressive mindsets and dispositions.

I believe that firstly, the change needs to come from the very families and homes of differently abled individuals or those with mental health issues. As caregivers, siblings and friends, stand with your loved ones, speak for them and love them for who they are. Don't hold them back by not taking them to parks, malls, family gatherings and events just in case they might draw attention or censure. If you encounter offensive language or behaviour, take issue by educating and then advocating.

When Mo tells me that he cannot count money fast enough at the drive-thru and sometimes the customers complain, I draw his attention to the fact that in his first month in the job a customer wrote a wonderful note to McDonald's congratulating them on employing such a pleasant and polite worker. The charmer that Mo is, he often responds, "Thank you for raising me so well mama". However, for the future, I am preparing Mo to seek the understanding of dissatisfied customers by communicating his challenges to them so that he can stand up for himself. 

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