Participation, not Sympathy- the Freedom of the differently abled

She opened her eyes, confused and exasperated. The darkness in the room seemed to crawl on the legs of the bed. She could feel sweat on her skin. Faint familiar beeps accompanied by the sound of her own breath, speared the silence. Horrified, she tried to sit up, but the excruciating pain in every part of her body, made her end up slamming helplessly against the bed, only her restraints jingled. For the next few minutes she delivered another round of screaming and sobbing, only to never have anyone respond back. Forty minutes later, there was a click on the door. A lady, dressed in white apron, walked in with some sophisticated apparatus. It had a pointy head that she would call a needle. This part of the drill was vivid in her mind. The needle goes into the skin, and within minutes she goes back to the calm, serene infinity of euphoria. She has been in this asylum for many years now, so many that she has lost track of which month it is. But it still seems like it was just yesterday, when she was a chirpy jovial teenager, going to school, playing games and gossiping during breaks, with her group of friends. She sure was the apple of their eyes. Would they come see her if they knew she was here? Would it make her happy if they came and saw her? She thought all of this to herself.

Life had really turned upside down at the blink of an eye. In the last verdict, she herself had heard the doctor, loud and clear; she was a serious case of Transient Global Amnesia- an anomaly typically found in middle-aged and old-aged adults. She wasn’t really born with it. But the frequency at which the seizures and panic attacks were escalating, there was little hope of recovery. To top it all, the anticipation of things turning worse, had massively ignored the fact that, when she did recall her old memories, she was actually unaffected by the disorder. And know what? It was during these times that she felt the real helplessness. What had she done to feel so helpless, so dependent? They would not even take her word when she kept howling and repeating that, the beast standing on the other side of the court-room was indeed the one who had picked her best friend from outside their school. She distinctly remembered the face that had identified itself as a friend from social media, the night she went missing. Three days later her naked body was found in a trash-yard on the outskirts of the city. She could never forget that face. Her faith in justice was silenced by the fact that, ‘mentally challenged’ people can’t testify in the court of law.

Just when nothing could go worse, her family seemed to be ‘ashamed’ of her conditions. Turns out, their way of helping her out was, leaving her in restrains where she was to depend on her nurses for something as petty as grabbing herself a glass of water! Having grown up as a strong and bright girl, anxiously waiting for the opportunity to play her role in the economic development of her country, as an engineer, it felt like jail to be treated with such commiseration. All this only kept spiralling in on direction. She was one out of the 500 million people in the world who either grew up with, or acquired a mental or physical disability, leading a life the other side of the coin can barely comprehend.  They are perceived as ‘disabled’ as a consequence of their mental, physical or sensory impairment, by the society, their families, and their government. They can’t make choices for themselves.

Half the problem starts with pity, she thought to herself, as she lied there, half-asleep, staring through the haze, at the blank ceiling that seemed to glare down at her till her eyes accepted defeat and shut. When her own family started paying extra attention to the way she led her daily life, monitoring the way she interacts with people, withdrawing her from school, prohibiting her from public transport, isolating her from the one close person that at least understood and backed her confidence- her brother; much of it was because they had started dealing with the situation with toxic compassion. “I should have been careful with what I wished for” she sighed. Her insatiable desire to be in the limelight, steal the center of attention, had somewhat come true, and in a jiffy, life had gone all haywire. She couldn’t figure what handicapped her more- the social barriers barricading her from participation, or the moments of seizures and convulsions that for a few minutes switched off her stimulus from the constant segregation she was subjected to.

A handicap is, in fact, more than a disorder, a limitation on the freedom to part-take in the being of the community on an equal level with the fortunate. But, how are these 500 million people a minority? How is it so easy for the fortunate to make them feel exclusive and deprived at the same time? The answer is homogeneity. They all feel alone, each of them. The mentally ill and the mentally slow, the visually, hearing and speech impaired, the ones with restricted mobility, each of them encounter barriers of different kinds, which must ideally be dealt with, in different ways. The feeling of ‘nobody gets me’ adds to the seclusion, and in most cases, blows out the remnant hopes of a turn-around. Digging deeper, I also seem to have found a probable driver for the same. The civil society we live in, today, seems to be controlled by and configured to cater, only to people who are in ‘full possession of all their physical and mental faculties’, and, in the process, their focus on making things better for the ones who aren’t, proves to not be doing a great job, at least when the curtain of recent amendments in Law and Order is withdrawn.

Knowingly, or unknowingly her guardians, just like most other would, ended up treating the impairment as some sort of an excuse for isolating her from experiences that were a part of the normal development she was entitled to until now. After a point of time, she would just pretend to be unconscious, every time they came to visit her, because that way it was easier to not be swallowed by the self-pity their gifts and concern ended up generating. She had turned weary of the condolence in their eyes. She did not need ‘special’ treatment. She just needed the freedom to fulfill her role, in her family and her society, to make decisions of her life, to meet her humane obligations on her own. Light at the end of the tunnel, her brother knew how she craved to finish her education. Occasionally, he would drag a chair by her bed, sit by her side for hours and recall, how as children, they would compete over remembering Algebra formulae, (and its only ironic how she always won). He would tell her that one day he will muster the courage to convince their parents how deserving she was of getting her graduation and fulfilling her aspirations, convince the world how his sister is much more than her disability. He would whisper into her ears that the discriminating attitude of people around is just based out of their conditioning. They fail to look through the crutches, hearing aids, wheelchairs, and anxiety pills, at the real person, made of the same flesh and blood as them, equally capable of shining on their own, equally deserving of socio-cultural freedom, justice and choice. His words gave her the desire to stick around- the hope to stand up and demand a voice of her own, to command her right to take part. There were umpteen cases of those who with further limited communication skills have shown themselves fully capable of expressing their point of view. The developments on self-advocacy movements of disabled people, her brother would talk about, further fanned the flames in her heart.

He wasn’t lying. In an attempt to explain to their father, the seriousness of the issue, across the dinner table, he did finally put across the fact that the way they are dealing with his sister’s case, its only complicating things for her, encroaching on her basic freedom to equality, placing her at a disadvantage, whereas, all this extra care and exclusivity should ideally be a support for her to go out there and achieve her goals. He said, “Father, her disability could have been completely avoidable if you were to treat us both as equals, deserving equal opportunities in career, society and home. Why should I be the only one having to take care of you when you grow old? Does she not have the right to do something for her parents? Or don’t you have enough faith in the values you have brought us up with, that being a part of such a progressive society, you are still stuck on rotten stigmas?”. He added, “In a sociology lecture at my college today, the professor was explaining to us about the psychology of patients. In the part about mental health, I realized that the rehabilitation center she has been held in for all this while is actually just an old traditional practice of having a medical supervision in an institutional setting. This is no longer effective. Across the globe, several programs that provide qualified social and pedagogical services, are replacing these rehabs. But that won’t be enough. We are her family. It is imperative that we support her efforts in conquering the impairment, and that is possible only when we don’t intrude into her freedom to function within a normal social environment. It has actually been recognized people with much severe disability than hers have been able to live independently when the necessary support services, no more, no less are made available for her”.

The father listened intently, soaking every word he had to say. Something inside, made his eyes shine with pride. This was not the first time they were having a conversation about his daughter. But since the time they had started thinking that their family had been shattered because of the disability she had acquired, this was the first time he no longer looked at her as a liability. His daughter was an asset. Both his children were his assets. They both deserve the freedom to be treated as equals. “Far too many unfortunate individuals are forcefully institutionalized, but there is simply nothing in their condition to justify the trauma they have to go through.” he thought to himself, “I must be a support system to my daughter while I still can. Not only for her, I should build a support ecosystem to make situations better for every disabled individual out there, instead of making them feel weak”. Being a civil engineer himself, he started recalling how easily he ignored the doorways that were too narrow for wheelchairs, the steps of buildings and public transport that couldn’t be mounted, switches in the elevators and rooms that were beyond reach, washrooms that were only designed for regulars, which added to the frustration of the disabled on a daily basis. How blatantly the oral and written communication systems in schools and colleges ignored the challenged of the hearing and visually impaired, everything that a mentally challenged individual says, is dismissed, depicting utter indifference. Sympathy is the last thing they need. It’s time their participation in the society be reinstated and their freedoms defended.

The sound of familiar voices woke her up the next morning, and the sunlight that penetrated the room through the window she saw flung open for the first time, lit everything around. She saw her father and brother, standing near her bed, signing some papers and talking to the doctor. Faintly she recalled what the word ‘discharge’ meant. Whatever it did, for some reason it already felt good. They removed the restrains and let the brother walk her out. In his mind, the proud lad was bringing home a warrior from a battleground, bruised but victorious. She would now live with her family, and pursue her education, fulfill her goals of contributing to the development of her country. Though they knew that the medicines still need to be administered with care, it was a clean slate at her disposal now, and all three of them were confident that she was capable of filling it with flying colors.