“My son has no friends except for my cousins”, related a colleague recently. “He is having problems at school, but I am worried if I tell them about his special needs, the school may create even more issues”. She confided in me after she read my blog and found out that I have a special needs child.
Even though my baby is still small for school, I could relate to what she was saying. My special needs parenting journey has been less than three years, but I can already see how the special needs tag immediately sets the child apart. The fact that he is just a child like any other, a person first before being disabled, somehow gets lost.
My first brush with this ‘discrimination/ differential treatment’ was when my twins Abeer and Anvay were less than a year old. A relative visited us and when she was about to leave, she handed a toy to me saying it was for Abeer. I was quite taken aback but did not ask her why there was nothing for Anvay. Or why didn’t she say this toy is for both of them? The incident still bothers me. Another relative sent toys for Abeer, he didn’t forget Anvay, but felt unable to choose something for him. But I don’t understand why. Anvay is a toddler and any nice bright toy would do. Why the hesitation or confusion?
We have relatives who call us regularly, but they only ask about Abeer. I have to constantly remind their grandfather, that he has three grandsons – but he keeps going back to asking only about Abeer. I know he is working on it, but I feel bad that this is something that has to be worked on. At parties, lunches, dinners, Abeer runs around making friends with everyone. Anvay, ends up getting largely ignored. Few, if any, people come by to talk to him. If they did, they would see he has a beautiful smile and will give you a high five if you ask.
And these are not just my individual experiences. I am not writing this blog to vent. This is a widespread phenomenon. Every single parent of a child with special needs would have gone through a similar or worse experience regardless of countries or cultures. And this number is not small. If you do a google search, you will see that around 10% of the world’s population has some disability. It is the world’s largest minority group. And I didn’t even need these statistics to figure this out. Until I started writing about Anvay, I had no idea just how many people in my immediate circle had children with special needs. They reached out to me after reading my blog.
I have a young cousin who is visually impaired. His mother, my aunt, says that social exclusion is the hardest. While he is provided with basic rights like the opportunity to go to school, relevant materials, a special educator, but what breaks her heart is how he gets left out of social groups. How often he ends up eating lunch alone or does not get enough invites to birthday parties. She even says she has released expectations from the children in her family – when they know he can’t see, she wonders why they don’t come to him, talk to him and tell him what is happening. She is now teaching him to deal with rejection and avoidance at all levels, to help him become strong.
Being a member of many special needs support groups on Facebook, I keep coming across agonized parents, hurt or angry at how their children get treated. They could be invisible or for that matter ignored. Or even persecuted. Recently a mother of a teenage girl lamented that she did not know what to do for her daughter’s birthday. She couldn’t have a party, because no one would come and that would hurt her daughter’s feelings. Another mother once wrote about how hurt she was when her best friend invited her younger son for her child’s party but expressed her inability to invite the older, special needs child. Another parent talked about how her family was not being invited for an all family getaway and she suspected it was probably because of her special needs child. Another parent received an anonymous letter requesting her to keep her special needs daughter away from their children.
Ellen Stumbo, an active blogger talks about how her daughter with Down’s Syndrome was turned away from a dance class. Or Carissa from the United States talks about how her son Isaac, who is severely intellectually disabled becomes a tag along with his cousins, how his birthdays are forgotten or how he gets pushed to the sidelines in extra curricular activities. Another mother, Caiti is nervous before the start of every school year – wondering how her son will be treated in the new class.
Then of course there are strangers who stare, come across and ask weird questions. There are those who may treat you like the plague and ask their children to stay away.
Sometimes, this could even work the other way around, trying to be over protective could actually backfire. I have a friend whose son is unable to walk. He attended a regular school but got really mollycoddled by his teachers being the only disabled child in his school. This is love – but the reason he was given all this love was because of his disability. The child figured that and like any other child used this to his benefit and the teachers could not be strict with him. By the end of the academic year, his parents were asked to withdraw him from the school as they felt unable to discipline and teach him. But this is another case of disability coming before ability. Had they looked beyond his disability, they would have disciplined him as they did the other children.
I can carry on with many more examples, but the question is how do we address this exclusion? Are people even aware that their behaviour is discriminating? Or do they not care? My friend analyses this very well, “I have understood that there are three categories of people – the first, those who are naturally sensitive, second, those who have not been exposed to disability and do not know how to react and the third, who probably just don’t care or have a very negative notion of disability.”
I think she is bang on and hope that perhaps most people fall in the second category. I mentioned my family above – I know they all love us and I love them back. They would never do anything intentionally to hurt me or my family. Perhaps they just need to realise. And be willing to make that extra effort to overcome their awkwardness.
As a parent, I know I am my child’s best advocate, and it is my job to make people understand. It is my job to create awareness and sensitivity. It is my job to fight for his rights.
Being inclusive is simple. You just need the right intent. Remember to –
- Accept – the first step to being inclusive is to accept. Accept people of different abilities in your attitude, speech, and actions. Talk respectfully and behave respectfully.
- Understand – people with special needs are humans too – their disability should not come before their ability. They are complex individuals with emotions, needs and wants. Just like us.
- Communicate – someone who is different, is just that – different. Like you and I are from each other. Their difference should not set us apart – you can communicate with them with your eyes, words and hands.
- Empathise – understand how a special needs person may feel. Don’t sympathise, do not pity. No one needs that. Share and connect.
- Educate yourself – have a special needs person or parent around you? Don’t make your assumptions about them – talk and understand. Ask questions. Do not feel awkward – everyone can tell the difference between genuine concern and general curiosity.
- Raise an inclusive child – teach your child to be accepting of differences and diversity. They will be a better person for it.
Being inclusive is not difficult. Despite the challenges, there are some bright days. When Carissa’s older son Aidan, asked her to let Isaac be part of his school band, she hesitated, having seen him sidelined so many times. She went to the performance expecting Isaac to be the runner boy, but literally bawled to see him play the percussion with the rest of the team, having a GREAT time!
Inclusion is easy. As my young cousin Arijeet points out. “Inclusion means treating someone very different from you, just like any other human on earth (that’s what we all have in common). Talking with them, showing what you do, the games you play or the books your read are things that you can do to make a slightly different friend welcome and the same as you!”. He is happy to have found his set of friends who understand him and stand by him.
I will use Arijeet’s words as my parting shot. “My message would be to break the iceberg of difference between you and any peer, disabled or not, smart or dumb, short and thin or tall and fat with abs or not and make them melt into your warm friendship like water!”
Remember, just like you and me, special needs people deserve love, friendship and kindness. Let’s make this world a little more inclusive, a little more happy.
Please share this message and I look forward to your thoughts.