Saturday, August 27, 2011

Update...

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Hi everyone, it’s been a rather hectic week since I launched the blog..been here and there - doing this and that…so tonight I find time to update my blog. One scary thing is the UN Building Bomb Blast that happened earlier today, meehn! that shit was scary! I was at the UN House at 11a.m. the previous day, and I was supposed to go back next day (Friday) to pick up a document, but my colleague at the UN called me later in the evening to say because its half day at the UN on Fridays the document wouldn't be ready because the person who would sign it was out-of-office...bla bla bla so it would be better if I came in for it on Monday, I got upset and kept raving and ranting, now in retrospect, I realize that, that delay may very well have saved my life. Wow! Thank God for His mercies. I lost friends and colleagues in that tragic incident though; I don’t understand why it happened I can only pray to God to grant the souls of all the departed peaceful rest, and full and quick recovery for the injured, Amen.


Like I said on facebook, men and women who work in the UN are humanitarian and chivalrous, their work brings succor and hope to the needy, and their lives didn’t need to end in such a senseless manner. They are heroes, nothing less. This beautiful song by Sarah McLaughlin and Josh Groban (in the arms of an angel) is dedicated to all our fallen heroes in the UN Building Bomb Blast…it was indeed a BLACK FRIDAY…


One good thing though is that I’m feeling really good about this blog, I’ve had a lot of positive feedback so I’m encouraged to keep going…Not gonna write much today…just wanna share stuff that happened over the past few days that absolutely turned the waterworks on in me…2 separate incidences.. 


I have this facebook friend, let’s call her Eka, she lives in Germany, we’re really good friends, always supporting each other and advising each other and just generally being there for each other and because I don’t normally announce it on FB (gist for another day), she had no way of knowing that I have a disability.


So, I do this note about the disability bill and I tag her on it and for the first time she gets to know that her friend Duchess Irina is a PWD. So she calls me up almost immediately and asks me why I kept it from her, I explain to her that I didn't 'keep it from her', it just never came up in any of our conversations and I just didn’t see the need to bring it up as a separate discussion, because disability doesn’t and shouldn't define me, one shouldn’t have to introduce oneself as ‘hi, I’m Irene I have a disability’..she asks me what kind of disability I have and I explain…suddenly she breaks down and starts crying, apparently her 13 year old daughter has a physical disability too where one leg is considerably smaller and shorter than the other, she has broken the leg twice, so it is a good 2 sizes smaller in shoes and 5 inches shorter in length. Eka shared with me how as a mom, it tears her apart inside seeing her daughter wear shoes where one shoe leg fits snugly while the other leg has to be dragged along cos if she lifts the foot the shoe would fall off. This of course affects her movement and attracts taunts from other kids and made the little girl more conscious of her disability than necessary. And so my friend Eka resorted to swapping shoe sizes in the stores when she goes shopping cos she couldn’t bear to see her daughter suffer so much, i.e. when she buys a size 7 pair of shoes for instance, she would swap the right leg with a size 5 of similar shoes giving her a pair of shoes with sizes 5 and 7 and hope the checkout cashier doesn’t notice.


By the time Eka finished this story, I was also in tears cos memories come rushing back of how my late mom (God rest her sweet soul) would have done the exact same thing just to make me feel comfortable and ‘normal’. 


The 2nd incident happened a few weeks ago with my neighbor’s 6 year-old who is also a polio survivor, her daddy called me to help him convince her mom to let the kid go to school because she’s shielding her too much. Apparently the kid was being taunted in school and just the previous day at a children’s party she was dancing with the other kids and one of the bullies started mimicking her movements, she ignored him and that infuriated him so he pushed her down and called her cripple. Based on this she said she wouldn’t go to school anymore, while her mom was in support her dad was more matter-of-fact and wanted to take her back to school and lodge a complaint with the school authorities. The mom’s obstinate behavior was the reason he called me to intervene aside from the fact that I’m one of ‘his daughter’s kind’.


Well, I asked daddy to give the girl a break for that day and I took her home with me, bought her ice cream, played video games with her, she spent the entire day with me and kept asking all kinds of questions which made me cry because once more she reminded me of me. The most touching question she asked is, why doesn’t my daddy love me? Apparently she felt that by wanting to take her back to school (and possible taunting) her daddy didn’t love her…while trying hard to fight back my own tears, I explained to her how much both parents love her and the reason behind their different reactions/decisions. Suffice to say she went back to school and is doing her best to cope with bullies. This made me decide to dedicate a couple of blogging moments to discussing how children with disability can cope and the role of their family members in easing the experience.


For today however, I’m gonna end this by dropping a list of acceptable terminology for addressing persons with disabilities. I was truly shocked to learn that in this day and age people still use words like ‘cripple’ to refer to a person with a mobility impairment, much less used by a child to refer to a child. What are parents and schools teaching their wards these days? *bewildered and SMH*




Happy reading...see you around...




Appropriate Terminology...



When it comes to the issue of how to address persons with disabilities, we must realize that words hurt. Words carry power. A person can use a terrible word in a context that still shows that they respect the person and conversely use a first rate word and show no respect - so sometimes context is important.



Some would also argue that it depends on the preference of the Person with a Disability (PWD) on what they want to be called. I also go by the rule of letting the PWD take the lead in what they want to be called, however it is important to always use "people first" language - and this is NOT about PC, it is about using language to empower and dignify a human being. Politically correct means most often it has been accepted by people with disabilities themselves. Language is fluid and malleable - it changes.


The most politically correct and widely used term is 'disabled'. Most of the alternatives are considered inappropriate. There are some words, three especially, that have been rejected nearly universally - retardation and any derivative like retard, retarded; spastic and spaz; Cripple and crip. Just like the N word is used between peers - spaz and crip are used between close friends. However the word ‘retard’ is not used by anyone to describe themselves. 


Below are examples: 

1. Use "person with a disability" or "people with disabilities" person who uses a wheelchair (who is in a wheelchair) and NOT a "wheelchair person".


2. Use ‘’Person with developmental disability" (or intellectual disability) and NOT "mentally retarded". 


3. A blind person is either blind or visually impaired.


4. A D/deaf person is either deaf or hard of hearing.


5. A Deaf and blind person usually prefers the spelling Deaf-blind. 


6. A physically disabled person is physically disabled. In this context, it would be appropriate to use mobility impaired to signify the person's limitations. 


7. A wheelchair user is not wheelchair bound or confined to a wheelchair. You can either say that the person is a wheelchair user or you can identify them by their specific disability, e.g. Mr X has paraplegia. 


8. If a person is disabled due to chronic illness, ‘chronically ill’ is fine, or just disabled.

9. A person with a cognitive disability is just that- cognitively disabled.


10. A person with Autism is a person with Autism.


The word ‘handicapped’ is offensive to almost everyone as it implies that one is unable to do most things and this is not true of PWDs.


The idea of being ‘challenged’ emerged about 10 years ago and is condescending. People with disabilities are not challenged - you are challenged to play chess and one of you wins - disabilities you live with - you struggle - you face them head on - and there is no winning - there is only learning to accept and move onward. 



People who have cognitive disabilities have embraced the term self-advocates. This refers to the fact that they want to make their own decisions - they want others to stop making them for them. 



Some people who are autistic, blind, deaf, and a few other disabilities embrace their disability as a minority identity. They are not dismissing the fact that they are disabled - but they are dismissing it as a negative experience. I am autistic. I am deaf. I am blind. I am disabled. 

The most important thing is to make sure that one is sensitive in communicating with the disabled, when in doubt, just ask poilitely, ‘how would you like to be addressed?’



Useful links: 

Disability Language Style Guide: 
http://www.ncdj.org/styleguide.php