Going beyond ‘positive’ nomenclature

The lovely, very sweet, and very talented Kismi Toffee Bar is another blogger I would say I began reading quite recently. Soon enough, I found that she is a great writer, who loves to pen down things that are close to her, in a heart-felt and sensitive manner. The similarities between both of us amazed me, and they still continue to do so. The fact that she helps in the care of patients in her usual cheery, sweet way made me proud to know her.

I had requested her for a guest post some time back, and she obliged happily. She chose to write on something she sees every single day at work and around her, a subject she feels strongly about. I must say, her post made me think a lot too, into dimensions earlier unexplored by me.

Without further ado, here’s presenting to you…. Kismi!!

*******************************

Going beyond ‘positive’ nomenclature

I write this as a mother, father, daughter, son, sister, brother, wife, husband, grandmother, grandfather, girlfriend, boyfriend, friend, aunt, uncle, cousin, caretaker, caregiver, helper, teacher…. I write this as someone who feels and values relationships. I write this because it is on my mind every single day. And every single moment, even if subconsciously.

I request you to listen. After all, no matter how much we assure each other that it is his or her life and making any choice is her/his right, someone’s choice in some corner of the world is definitely touching our lives. In some way.

Today, I sat in another meeting. Sat through it all. Like I do every other day. But I am feeling extremely happy. Something about today’s meeting made it different.

I am one of the members of the rehabilitation team in a multi-rehab set-up here. I focus on communication, intellectual and cognitive areas and on swallowing disorders. Because we work with people with a wide range of disabilities, we are a very diverse team of professionals as well. And one of the highlights of any meeting is goal-setting and basically deciding the future for the child/teenager/adult who has the disability.

If you were to look around, you would find happy inspiring posters of children or adults with disability around you. If you read these posters or watch some movies, you will also notice that the term ‘disability’ is avoided or you are advised to avoid using it.  Many opine that disability comes with a ‘negative’ connotation. They would probably not write or say ‘disability’. And hence, you find a variety of terms floating around – differently-abled, special, unique, and so on and so forth. When I was in university until early last year, I liked these terms. They made me happy. They made me feel good. They made me feel hopeful. Now that I work with disabled people independently and see them onsite, I have learnt to comprehend and appreciate their issues with a wider perspective. While it is good to see the optimism and euphemism hovering around our little hearts and mind when we use these terms, I have learnt to agree to disagree.

Aren’t we all differently abled? Don’t we all revel in the fact that we are unique (like the rest)?

We are all differently abled. I take pride in my ability to multi-task. I am pathetic with directions on the road. You may be a great swimmer, but heights may scare you immensely.

Does reality change if you change the name?

No matter what you call the person, the need of the hour is to address her/his needs and desires, to some extent. And I am referring to all of us.

Do perspectives change if you change the name?

Perspectives do not change if you change the name. Perspectives change when there is awareness. When you try to educate someone on the real issue and present and share views in a friendly manner, that’s when perspectives change. Or widen. My best friend calling me a superstar will not make me one. Much as I hope it does. Perspectives also change when your life strongly intertwines with someone who has a disability.

Do health approaches change if we call them differently?

Not at all. An individual with hearing impairment still needs a hearing aid and/or a surgery. Or another line of treatment. It is not like you will encourage his ability to ‘not’ hear.

Are we trying to make them happy by calling them with a nice name?

Why should you use a ‘positive’ terminology to make a person feel good? You are still differentiating her/him anyway. You are basically making two groups – one without different abilities and one with different abilities. Now, that is a confusing situation. Why do we need to look at things, interpret it as a negative aspect, feel bad about it or worse still, sympathetic, and then go on to make up by coining a ‘positive’ name? I will tell you what makes me happy. Your calling me by my name. You may call me as a person with some disability, but I will refuse to be called, a disabled person. There is one big difference. It is always the individual who holds prime importance. She/he is at the zenith. By calling someone a disabled person or, worse still, as just disabled, your prioritization suffers gravely. It means you just chose to put the disability on top of the person. The individual has a disability. A little more than is common, maybe.

There is no need to shy away or be extra nice. Trust me, that would make me extremely uncomfortable if I were in their shoes.

So, because they are differently abled, will you be happy and let them be?

This one of those questions that has so many dimensions to it that finding answers becomes one lifelong journey. No matter what you call them, let us all admit this: We try to make them ‘normal’. I am ashamed to type this, but it is true. One moment we elevate disability to different ability, and then, we want to make them ‘adapt’ and feel ‘as normal as possible’. Or in some cases, give up all hope and just cling onto the euphemism.

Does that mean we leave kids with disabilities to be happy in their world? Does it mean we let the adults seek solace in the existing state of affairs?

No! Though it sounds ideal, it is highly impractical.

Firstly, we all live together, as one society. Secondly, we want their safety, and, sometimes, choosing to let them to be themselves is not safe. Thirdly, let’s admit it, it pains our heart to see them unattended to. Fourthly, every child/adult has something to say, and it is human to listen and respond.

However, enabling them to live with us cannot be single-sided. We need to constantly questions ourselves – “So, what can we do?”

I ask this because we are so focussed on getting them to acquire motor skills, communication skills, resolve weight issues, address that respiratory issue, modify that nasogastric feeding, repair that palatal cleft, improve that failing long-term memory, increase their reading ability, help them achieve the tripod grasp and then worry about a vocational attachment. Where in between all this do we all think of how we can modify our lives so that entering our lives becomes easier for them?

I speak for all of us. There are parents who have modifications in place at home for their differently abled children and teachers who help address education for such children in powerful ways. However, unfortunately, this is a small number that stands meekly, camouflaged by the huge number that corresponds to people who do not step back and think of how they can change their lifestyle a bit.

How many of the buildings around us have that much-needed ramp? Are the elevators working? Are the buttons way too high up, making them inaccessible for a person on a wheelchair? Are the toilets friendly to differently abled people? Does the public bus have a ramp leading into it? Is there sufficient space for the wheelchair to park? How many websites are friendly to persons with visual impairments? Are the taxis flashing their status in red and green only? Do all schools know of the aids available to help children with learning disability and help them excel before branding them and sending them off to ‘special’ schools? Are employment policies disability-friendly and not just limited to quota? Did you ever wonder how you could manipulate and make changes to that pencil so that a differently abled child can hold it better? Did you ever think of drawing lines on the notebook or answer script to aid his visual tracking? Are the benches in class placed in such a way that everyone can hear the teacher well? Is the teacher standing on a raised platform so that a child with hearing impairment can see her lips move?

All these are not very easy issues to handle. There will not be ideal solutions for many of these. What I am trying to emphasize is that accessibility issues have ample room for improvement. Sometimes, we overlook simple issues, but focus on developing new skills. There is a strong need for the entire process to be bi-directional.

A couple of weeks back, I met parents who had spent years and thousands of dollars trying to teach speech to their child, who is now a teenager. I asked them why they did not introduce signs or communication through pictures. They just shrugged off and said “Ah, well, others won’t understand what she expresses.” Why is our environment encouraging disability instead of enabling everyone?

Coming to today’s meeting. After innumerable meetings on how we can help children/adults with disability, today was the first time we discussed as to how we can help ourselves understand them better and make life easier for them. Ramps, wheelchairs, big signages, colours that are friendly for those with visual impairments are things you know of but, by no means, common. Not to the extent that they ought to be across the world.

Today, one of the potential employers ( of a multinational company) for students with intellectual disability, decided to put in place some small but wonderful measures to make the environment (definitely people included) friendly for all. I have this huge grin on my face now.

I can breathe a bit easy. I feel like I shouted my happiness out to the big, big world.

****************************

A note from Kismi:

 A big thanks to TGND for having me here. I know how much I have procrastinated through drafts, but she has been an absolutely wonderful person by being so understanding and sharing her special space with me. Being a huge fan of her blog that is a medium for her to speak her heart out, I did not want to do anything less. This is one of my constant thoughts, and I don’t think I can write that clearly enough. TGND, thanks so much, and sorry for such a long post! 🙂

Advertisements

38 thoughts on “Going beyond ‘positive’ nomenclature

  1. U are so right. We work with some blind persons here, and this is exactly what one of them was telling us – ‘what’s in a name whether u call me blind or visually challenged or whatever?’ All they need is to fill in the gaps they have nobody to fill in. They want to study, but there are hardly any books in Braille! And so on.

    Esp. bcoz of the injured knee, I am now realizing how many facilities we lack in the most common places – no ramps, steep staircases and so on!

    Very well written!:)

    Like

    1. Hey Swaram!

      Thanks so much 🙂 I think that person nailed it on the head! It is very very true that all they need is lesser gaps. everything else is just junk – sorry to say it so harshly but I seem to find it so, with every passing day.

      Yes, I can relate to your knee. I had a ligament tear when playing once and know what you mean.

      Thankee Swaram 🙂

      Like

  2. This post makes me glad, very glad. I am happy to say that I work in such a company, where accessibility is given equal importance, and design too. We make websites which can be used by all, irrespective of how clear your vision is or how sharp your ears are.

    And what a line of thought you have presented here, Toffee, well done 🙂 Yes, every one is unique and everyone is special. Each one of us is differently-abled. I wish people become more aware of the fact that a differently abled person also has been given this life to enjoy, just like us – it is meaningless to make them aware of their ‘differentness’. I have had a related real life scenario in my family, will tell you about it when we have our gupshup time 😉

    Like

    1. Hey Visha!

      Sorry for the late reply. you know why 🙂
      That’s brilliant! Am really happy to know that your company is sensitive to these issues. We can’t have enough of access ever! But every step is mighty important. Yay to you!
      I would like to know more during our gupshup time 🙂 Thanks Visha for all the kind words 🙂

      Like

  3. Hi Zephyr!

    Thanks a lot 🙂
    Ah! Yes! That handicapped now is really looked down upon. And well, there is a classification. So there is a reason why a handicap is a handicap, and an impairment is not a handicap and disability is not impairment etc. I must do a post in that 🙂 Thanks for sharing this!
    I understand what you mean when you say “Just help if you can”. But sadly, I think sometimes we must stop and explain. Somehow there is a need for a bit of sensitization. Pity is bad but extremely hard to channel out. The first instinct of feeling sorry needs some practise to overcome, I guess.
    Thanks a lot Zephyr. Really respect your thoughts 🙂

    Like

  4. That was such a lovely and heartfelt post, Kismitoffeebar. (What a sweet name!) I agree completely with you about giving fancy names to gloss over something. First it used to be handicapped and then disabled and then special and differently abled. The last one, as pointed out by you is the biggest joke of it all.

    And being er…whatever….I can empathise with those who have to navigate through their daily lives with some ‘different’ ability or the other. When I ask someone to please read out a sign for me, I get a ‘look’ and then a load of unwanted advice. I don’t feel like explaining to people why I am losing my sight or why I need help. Just help if you can.

    Sensitivity is something that seems to be alien to us. We gloat in our perfection and pity those who are imperfect in our eyes. An eye opener post, thanks a lot, both girls TGND and you!

    Like

  5. Wonderful post, Kismi! I understood how much of a difference infrastructure and facilities and awareness drives can make to people with disabilities when I started living in the UK. There were so many little things that made life so much easier. Buses had special ramps which could be activated. shops in split levels would have special elevators, whose buttons would be placed at convenient heights. All buses had places for wheel chairs/buggies and areas demarcated for people with disabilities/older people and pregnant people. And more importantly, people respected these places, and would ensure that people who needed them would get them. I had countless examples of people giving me a seat when I was pregnant. I’ve seen awareness campaigns, which are subtle, sensitive and put their message across beautifully without sounding patronizing at all.

    As you say, it is a bi-directional process, all of us need to understand, and make space, make way. Even in schools. I knew people back in UK(sadly they were Indians), who did not want to put their children into state schools because children with disabilities are also present, and apparently it would take away from the attention that their child would have received. I was shocked by that statement. When daughter was in nursery, one of the children in her group was a special needs child. And contrary to what people might think, I think she(and her group mates) benefited as much ,as that child did by the fact that they had him in the group. I think they learnt some important life skills of sensitivity, inclusiveness, and the fact that all of us are different and different is never a bad thing. As you say, we are all differently abled. By the end of the year, the children of this group had learnt sign language, and the special needschild had started interacting better with his peers. I still value that one year daughter spent in that group.

    Just loved your post, and reading of what you do!

    Like

    1. Hi Smitha! 🙂

      Thanks a lot Smitha. I am sorry for the late reply as I am away and have limited access.
      I really appreciate your lovely feedback there. I think you made a beautiful point when you stated that all these campaigns are done with sensitivity and no patronizing attitude. It is almost as if everyone knows that everyone else needs some help/ customization.
      Am glad you think that way of schools that are integrated. right now, we have initiatives here whereby children with disability and otherwise are integrated atleast during lunchbreaks, especially if the two schools are close and integration becomes easy. It is a very very moving sight to watch them all interact – I mean, it makes you realize that this is how things should be!
      Thank you so much for sharing your thoughts. Means a lot 🙂

      Like

  6. Have always wondered about this ‘Does reality change if you change the name?’. But of course, I did not have much idea of the many practical necessities to actually help such people and make their lives better. Also, with you on the aspect of us having to make space for them, rather than they measure up to be able to live amongst us.

    Great post Kismi! Love the depth and the perspective here..

    Like

    1. Hi Priya!

      Thanks a lot 🙂 I am really sorry for the long delay in replying to your viewpoint. I am on vacation (Yay!) and hence, limited access.
      Reality does not change when you change the name. Maybe it will give you some temporary dose of happiness?
      Thankee again! 🙂

      Like

  7. Thank you Kismi for writing on this very essential issue. I believe it is essential for we are all at different times & situations in life need to avail these basic amenities, the absence of which can make the life of every differently abled person just a tad more difficult.

    Loved the post Kismi, thank you for writing on this very important topic 🙂

    Like

  8. I had a friend in class 12th who could not walk because he had polio. Everyday, someone from his house will drop him at school in his wheelchair (he lived nearby). In the school, there were so many times when he had difficulty in moving from one place to another. Sometimes his wheelchair had to be lifted by us. And it would have been hell for him to live with that nightmare of people staring at him with pity.
    When I lived in Manchester, I realised how easy his life would have been if a simple thing like a ramp would have been provided in India.
    This was a brilliant post. Loved it.
    TGND,
    It is amazing that you are giving me blog ideas at such a superfast rate. 🙂 I need to share that guy’s story.

    Like

    1. Hey there Amit!

      It is true that life is easier in places where accessibility is taken care of to a good extent. Pity – the worst thing one can offer, seriously. Sometimes people unknowingly tssk away and then sympathize. I once had a ligament tear while playing basketball. Since I had hurt my knee very bad, I had to wear some support. I disliked the pity that strangers offered then.
      Thank you Amit! 🙂

      Like

  9. It is a brilliant post highlighting a crucial issue that affects about 5% of country’s population.The measure of a country’s and its people’s development on the social,ethical and humane side is reflected by its concern and care for such people at a disadvantage due to disability either by birth or age..The government and society should therefore foster a sense of inclusiveness to those with disability by providing equal opportunities in every area and a feeling they are not neglected..There should be sensitivity in dealing with them by making it appear
    non intrusive,seamless and participative ensuring all the time that they lead a dignified life like any other.It is not government alone but every segment of society including individuals that should assume responsibility for providing a level playing field. without a patronizing attitude.
    I never knew the writer,KIsmi or Toffee, whatever her real name, is doing such a laudable and yeoman service.Hats off to her for using the guest post in propagating the message effectively and efficiently.
    My thanks are due to TGND too

    Like

    1. Thanks a lot KP. I feel very very humbled and even though you have been too kind with your words, I take it as encouragement to do more.
      “non intrusive,seamless and participative ensuring all the time that they lead a dignified life like any other.It is not government alone but every segment of society including individuals that should assume responsibility for providing a level playing field. without a patronizing attitude.” – I can’t tell you how much I loved this. You are absolutely right.
      It was wonderful to know your valuable inputs and opinion KP. Thanks a lot again 🙂

      Like

  10. Wonderful post, Kismi!! I too question the need to find fancy names to describe disabilities! These people don’t need to be told they’re special…they actually need to be treated like everyone else! At the most, we can make it easier for them to be integrated into ‘normal’ society!
    Thanks, so much TGND for hosting Kismi!!

    Like

    1. Thanks Roshni! 🙂
      Am glad you feel that way about fancy names. there is way too much emphasis on something unwanted when there is so much to do! But i learn t my lesson and am sure everyone will realize it. I am just too impatient to see a change.
      Yea, integration – the KEY word!

      Like

  11. First of all, I am happy that you did not choose to be one of those IT/ITES/BPO employees in swanky IT parks, contributing to practically nothing, except price-rises. I am happy that you have chosen a field where you can make a significant contribution, unlike those ‘software engineers’ that I see all around me.

    I don’t think I know enough on this topic to write any intelligent comments, but I will leave you with one link where I have translated an inspirational song sung for disabled people –

    http://www.destinationinfinity.org/2009/05/03/an-inspiring-song-and-an-inspiring-poem/

    Destination Infinity

    Like

    1. Hi DI!

      Thanks for sharing your views 🙂
      To be honest, the most important thing is doing what makes one happy. So, being a software engineer or a painter is more of a personal choice.
      The beautiful thing about helping anyone is that it requires no profession at all. I think engineers play a super important role in devising aids or making modifications to wheelchairs just as much as the nurse who keeps a cushion to help the user feel better. It is more of senstizing peopel on variosu issues at different levels as well.

      But yes, this keeps me happy. Very happy. I don’t mind doing this day in and day out and meet a variety of people. I would love to read your post 🙂

      Like

  12. A beautiful post Toffee and you know how close this topic is to my heart. I am really glad that you have chosen this topic as your guest post here because it is another means of making people aware of what kind of real world we live in.

    I sincerely wish that people really start understanding the needs of differently abled people and do something about it and not just look at them with pity or call them with fancy names.

    Thanks TGND for hosting Toffee here. It was a pleasure reading her here as well 🙂

    Like

  13. I have seen this from very close quarters.. till I was in india I never paid heed to all.. and I am not very happy about it.. my parents visited me in UK and thats when I saw the difference..
    It was so difficult for my dad go climb the bus.. or get Into hi office on 5th floor.. and here in UK he was visiting places using the tube in London.. no problems what so ever..

    I mean if only things were thought about life would have been so much easier a small thing like a ramp .. or a lift to 5th floor..

    I have never talked about this ever but the post made me say it. I wish and hope people are not like me indifferent.. and some thoughts are given to all the needs of all the people….

    TGND.. well done girl for being a lovely host to another lovely person..thanks.

    Like

    1. I understand how you feel about accessibility in UK, Bikram. But trust you are a very good observer coz’ you noticed it and had these thoughts – that is really the much needed first step/ initiative. There are many things to do from here. I’d love to talk about it more if you are interested. Like, meeting the transport authorities and raising this issue?
      You are too kind to call me a lovely person. Thanks for sharing such insight! 🙂 It means a lot.

      Like

  14. Hi Aparna!

    Thank you! 🙂
    The consultant is absolutely right. Each of us has limitations during our life, some for a longer period and some temporarily. Some amount of planning, sensitivity and thoughtfulness is all it takes to make lives better!

    Like

  15. Loved this post. Some years ago, when we were making our offices friendly for persons with disability, our consultant told us that everyone at some point or the other suffers from some disability. If you are pregnant, then you have some disabiity for those 9 months. If you had an accident and are using a cane, then you have a temporary disability. Really opened our eyes to small but significant improvements that can be made to every living and working space to make life easier for people with challenges, and those without.

    Like

  16. Gb – Thanks so much. I understand how you feel! 🙂 There may not be much facilities for disability. But that’s not the cause of the problem. The cause is, astonishingly, not many know and those who know aren’t doing enough?
    Yeah, facilities are awesome here and the awareness is good. But it is a smaller country and a big diverse country like India needs more efforts and impetus as well. But yes, surely, there are many many facilities and laws for a start. I believe we need to start working on them seriously.
    Thank you Gb. Your words mean a lot 🙂

    Like

  17. Wow wow wow toffee – this is a brilliant post , a perfect eye opener for it makes us look at things differently!

    I completely agree with you about being differently abled – we all are and we need to respect that “ableness”. You know I have also observed that when God takes away one thing He has blessed them with something more stronger. Like a contestant in a dance program who was born deaf and dumb. But he could dance on any song without missing a beat..even better than people with perfect hearing. It was stupendous and doctors could only explain this as it being a miracle as he loved dancing 🙂

    As far as changes are concerned, yes our country really needs to look at things differently and change!

    Huuggss toffee for such a heart warming post ❤

    @ TNGD – Its wonderful being on your blog!Thank you so much 🙂

    Like

    1. Thanks Privy! 🙂 Yea, differently abled or having a disability – the need of the hour is to build a mutually conducive environment by sensitizing people and being sensitive ourselves.
      The dancer you mentioned is one example. But there are many Privy! And sadly, we forget the everyday heroes who are heroes nevertheless.
      I look forward to a day when these are are taken for granted 🙂
      Hugs right back Privy 🙂

      Like

  18. Kismi – this is such a wonderful post.. and I am almost in tears here. Sometimes, these are my exact thoughts. Using a different name, is not going to change their lives. A change in the society would do them real good. And as you mentioned, we have always been trying to make them “normal”. We want them to adapt – which is unjust. Your expectations are not right. Change should start happening, that too in our country. There is no infrastructure at all for differently-abled people here. Getting into a bus, is itself very tough. There is no much I want to pour out and yet, words are just stopping me. Hope you understand how I feel about this post of yours. I am glad, things are slowly taking good shape at your re-hab center.

    TNGD – Thanks for letting Kismi share your space!

    Like

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s