#my story

 

There are numerous benefits of education and equally many critics exist too but that’s the discussion I will gladly leave out today. Today I will only acknowledge the good of education, especially in my context. At the time I fell ill and realized I had now to live with a disability; I had only completed 12 Std and was preparing for the medical entrance examination. My confidence, self-esteem, self-image was all time low. The journey ahead was dark and gloomy. I could not even toss and turn on my own, my mother a graduate and baba(father) an M.Com and MBA degree holder became my full-time carer feeding me, bathing me changing my clothes, carrying me to the toilet and doing everything for me but I never heard an uff! From them, in fact, they defended me when people said my life was now over. My elder brother was in medical school and being the daughter of this wonderfully positive, optimistic, educated family  I had promised myself I will get a bachelors’ degree when or how I didn’t know I just knew I had to. 

That determination became stronger when after coming home from the hospital I first did hold a pen and I couldn’t even draw a straight line it took literally years of practice. I somehow found the courage and did my bachelors I couldn’t even write for long without pain and I had a different walking stick then but I did complete it. The knowledge gained and that piece of paper, the degree changed my total outlook toward myself and life. Today what you see is a totally different Srijana than the old one. 

So I figured if one degree can do so much for me then why not stick to my original plan of being a doctor so today I’m on my path to give my exam for master of sociology starting on 5th Dec, my birthday and ending on 18th  I hope I do well on all my papers for which I have to study and for that I have to take a small  break from the blog.

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Tired but trying

They say “what doesn’t kills you makes you stronger” but they are so wrong what doesn’t kill you just does not kill you and that may be all you get. Except sometimes what does not kill you maims you, cripples you, leaves you weak and makes you angry, sad; feel cheated.

Some things that didn’t kill me did come so close that it’s still damaging. They didn’t all make me better some made me worse and bitter. Isn’t that okay, cant something just break you? The world wants us to believe that admitting defeat makes us weak. However, you just can’t be positive all the time we may be angry, frustrated, sad, annoyed, scared, anxious or any of the numerous negative feelings. Having feelings does not make a negative person. It only states how human you are.

I feel its okay to wish the nightmare to end, to pray furiously for the world to stop testing you, to cry yourself to sleep every night; to say aloud “I have had enough, I can’t take it anymore”. Bleed and bleed openly, there can and should be pride in vulnerability.

How can anyone be certain for sure that what I been through would make you kill yourself but then pain is relative.  So until you are broken, you don’t know what you are made of. Being broken gives you the ability to build yourself all over again. And strength for it all comes from good things family, friends, books and satisfaction of a wonderful moment.

They say “what doesn’t kills you makes you stronger” if that’s true then I am expecting my superpowers and cape any day now!

all about me

 

That’s Dorian Grey?  It’s the 100th time now, said my friend with very apparent exaggeration and a genuine look of disgust. This, however, was a ruse to recommend me the latest book she was reading, a love story, “Me before you” by Jojo Moyes. I don’t mind rereading and genres don’t concern me. Hence I thought I’d give it a chance but I don’t trust her taste therefore when it wasn’t available for free on the world wide web and with talks going on for turning it into a movie I skipped buying it telling her I’ll watch the movie and telling myself I’ll hold on to my money for now.

That was in 2013 and I had forgotten all about it until one fine day in 2017 the internet informed me of the movie and I watched it.

“Me before you” is a romance novel first published on January 2012. Although it may seem realistic, the book is a work of fiction, a romantic story of a wealthy man with disability Will Traynor and his caregiver Louisa Clark, living amid the people who try to convince him not to take his own life; they fail and he dies. It is an “autobiographical” account of Will after he has been quadriplegic since a road accident several years earlier. The plot is the same in the film.  In one of the scene, he says, “I get that this could be a good life, but it’s not my life. I can’t be the sort of man who accepts this.” Since throughout the movie Will is shown to be strong, determined and uncompromising, it seems clear that the “sort of man” who would put up with a paralyzed body and its demands could only be inferior to him. The idea that it is better to be dead than live with disabilities has been showcased many times.  Like in Million Dollar Baby, Whose Life Is It Anyway?, The Sea Inside and etc. Television Film Theater all seems to love those individuals who want to die; they’re less keen to cover the rest “who want to live”.

When able people talk about suicide, they’re discouraged, offered prevention, psychiatric support because then suicide is never seen as desirable. When a person with disability talks of it, suddenly the conversation is overtaken with words like ‘choice’  ‘autonomy’ ‘freedom’ ‘out of love’ and people rush to uphold these prized principles then the talk of prevention and mental health support are rare. What kind of message is this since when did suicide become ok?

It’s said only the injured can understand the pain of the wounded, do we really need be injured to understand the right to life of the person with disabilities.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

i am you – a page from my journal

Please stop looking at me like that your gaze stab and bleed me, it hurts so bad but I know I can’t put my thoughts into words or explain anything to you before I get all rallied up in emotions, you that can understand it all but don’t want to; you that are the society of which I am a part too.

I understand you are sad to see me in such a sorry state but are you “sad”? Isn’t it acceptable anymore for a person to fall sick; being vulnerable is what a human is I am a human seems you are don’t know or accept the sad part of reality; makes me question are you really that delusional.

You start your sympathy speech every time telling me but then pretend I am deaf for a moment and direct all you have to say to my parents don’t you know how hurt they feel for what parents wish hardship for their children.  You speak of how hard my life will be now, its ok you speak the truth but who knows of the future quit telling me my survival my fight is useless if you can’t make my faith stronger my belief in hope please don’t make me believe in darkness.

One stumble in life, an ill turn of fate was all you required to see me in a new light through a biased glass. You took all my achievements stripped me of all the respect and love I had earned, put me naked on a podium for display. Sometimes I think you waited for all this patiently, sadness in your words but do I see happiness in your eyes.

I shrink with pain the steps I force myself to walk I fall, fail yet I walk.

It’s said everything in life happens for a reason. I’ve seen none till now, wonder what will I see but I know none even you won’t speak of me with pity but you will celebrate my life and I won’t let anything come in my way to achieve what I have always set my eyes on, no matter disability or no disability. I am not perfect but who are we kidding neither are you.

Written some 5 years ago when I just struggling to accept my new identity as Srijana the girl with a “strange” walking disability.

Dignified & Correct terminologies- words are powerful

Words have an immense power they can easily make or break a person. A word is very powerful and we often underestimate its power.
Of late I have been reading a lot of blogs describing people with disability as “differently able” which angers me a lot because I want to be referred to as person first not different because I have a disability. This is my opinion and opinions are not facts that can’t be proved wrong.

While addressing people with disabilities, knowingly or unknowingly, many of us use undignified and incorrect terminologies. These words will play a negative impact on both the personal and professional development of people with disabilities. This got me thinking there must be data for correct and dignified terminology, here are some I found;

 

Incorrect (out-dated, undignified ) Correct (Dignified)
  • ·         Handicapped, Disabled, Abnormal, Differently Able, special
 

Persons with Disabilities, People with Disability

 

  • ·         Normal Person, Healthy Person
Person without Disability
  • ·         Crippled, Lame, invalid
Person with Physical Disability
  • ·         Blind
Person who is Blind, Visually Impaired Person
  • ·         Deaf, Mute, tongue-tied
Person who is deaf, Person with Hearing Impairments, Person who is unable to speak, non-verbal
  • ·         Wheelchair bound, confined or restricted to a wheelchair
Person who uses a wheelchair, wheelchair user
  • ·         Crazy, Insane, Psycho, Mentally ill
Person with Psychiatric disability, emotional disorder, behavior disorder, person with mental illness
  • ·         Mentally Retarded, Retarded, Slow, Idiot, mentally defective, moron, slow, imbecile, feeble-minded, Down’s person
Person with Intellectual Disabilities
   

*THIS IS NO WAY  AN EXSUSTIVE LIST  please see

http://www.cpdusu.org/about/committee/awareness/

http://www.nfdn.org.np/advocacy-documents/dignified-terminologies-pwds.html

http://www.courts.ca.gov/partners/documents/7-terminology.pdf

http://nda.ie/Publications/Attitudes/Appropriate-Terms-to-Use-about-Disability/

http://www.onestops.info/article.php?article_id=14

http://www.miusa.org/sites/default/files/documents/resource/Respectful%20Disability%20Language.pdf

Things to remember

  • Individuals with disabilities are people!
  • Individuals with disabilities are whole people!
  • They expect to be treated with the same dignity and respect that you do.
  • Just because someone has a disability does not mean he/she is disabled.

Disability vs. Handicap

A disability is a condition caused by such things as an accident or trauma, disease, or genetics that limits a person’s vision, hearing, speech, mobility, or mental function.
A handicap is a constraint imposed upon a person, regardless of that person’s ability or disability. These constraints can be physical or attitudinal. For example, stairs and curbs are handicaps imposed on those who use wheelchairs.
Always remember that the person is not the condition. Keep all your speech person focused, not disability focused.

We live we learn but most importantly we learn for life is always changing always evolving.