And the mistakes people make when dealing with people with disability and hidden illnesses. Aarthi Sampath who has Limb Girdle Muscular Dystrophy shares her some of worst experiences of being a wheelchair user.
I am quite accustomed to people staring at me, curiously, inquisitively. They often wonder whether I have polio as awareness of other illnesses leading to paralysis is limited. So I have to face inane questions like, “Did you get some fever which paralysed you?” “Did you visit a good doctor?” “How are you ever going to manage?”
And of course the inevitable worry about whether I will ever get married and have children. The question about marriage has emerged from different sources in different situations, even when it has made me and my family uncomfortable and disheartened. Interestingly, the people who have raised the ‘marriage question’, be it a relative or a friend, have always been oblivious to how we would feel about it.
These questions have plagued me from the day I was diagnosed with Muscular dystrophy.
At first it was not a big deal but gradually these questions began to test my patience and I was afraid to face the world.
When I was studying in 8th standard there was a lady in my apartment, who asked my mother about my way of walking and she even sympathised and said, "Will someone ever marry your daughter"? This question dismayed my mother, and my mom explained to that lady, "Its too early to speak about these things"! My mother was naturally heartbroken. Then there was this person who once asked me whether my parents had ever taken me to good doctors!
I once spent a few days with a relative who was wont to criticising me for every little thing I couldn’t do, something even as simple as combing my hair, as I have a problem in raising my hands. She used to compare me with her daughter, not realising that I suffered from a physical ailment, or maybe simply being insensitive about it. I needed the support of a wall or a person to be able to walk, and that did not escape her barbs as well. Once when I was about to stumble and fall, she was full of pity for me and wondered how my mother managed me. That was the extent of her insensitivity. Once on a shopping spree with this relative, I was holding her for support. When she suddenly moved away, my hand slipped off her shoulder and I stumbled. Luckily, her daughter helped me, and I managed to regain my composure.. My relative could not hide her disgust at the situation. .
On yet another occasion when I had gone out with my parents for lunch, I found it difficult to rise from the table after lunch. Our host, instead of helping me, not only forced me to get up without any support but also made me wash my own plate, announcing grandly that children should be taught to do their own jobs. She had absolutely no idea about the discomfort I was in.
I have been on the receiving end of all kinds of humiliation at different junctures. Once a relative asked my mother why she spends money on my art classes. But, again, there have also been some genuine well-wishers who have always encouraged me in all my endeavours.
I am now a stronger person having faced adversities of all kinds. I now embrace my disability as something of my own, something that I have learnt to live with and I am proud of how I have coped with it.
The Do’s and Dont’s of encounters with a Person with Disability
- Stop being inquisitive. Not only do they enquire about how we use the restroom, but also unfairly compare us with their independent children.
- Stop advising to be positive. Every human being has his highs and lows. But when it comes to physical challenges, they expect us to be more optimistic and have positive vibe always. They forget that we are humans too , we also have emotions and we have every right to get angry when something fails.
- Marriage is not everything. Most people think physically challenged people are not eligible for choosing a life partner. On the other hand, people should also realise that marriage is not everything. Some people are insensitive, and ask hurtful questions. My mother once asked a doctor about the possibility of my marriage, to which he replied, “"She would remain seated in a corner for the rest of her life". So even a doctor, who is expected to be more aware and more sensitive about his patient’s well-being, could be so hurtful. Such have been my experiences!
- Make your kids aware about disabilities: Kids are very special,they believe everything they see. Parents should educate their kids about people with disabilities and wheelchairs especially,as we are part of the society, not aliens. If they are not taught by their parents, they would may draw wrong conclusions about people in wheelchairs .
- Don't compare different kinds of disabilities. Every disability has its own challenges. People often mistake people who are wheelchair users to have the same ailments. But in reality, even muscular dystrophy and its subtypes are also different from each other.
- Stop asking for handshakes or high fives from all disabled people. Each disability brings with it its own challenges. This is one of the problems I face as I cannot lift my hands or clap. I also have a problem with handshakes as again I cannot lift my hands. But people are often insensitive to this.
- Do not treat wheelchair-users like kids. When you meet grown-ups in wheelchairs, please treat them like grown-ups and don't behave with them as though they are kids. Yet another anamoly is when people come to invite our families for an occasion, they do not even bother to ask us to attend. They assume that we will not like to attend, whereas it is our decision whether we attend or not..
