Years of mental and emotional abuse have served to make Karen Hall a stronger person but she said that without a mother and a grandmother who never saw her disability as a challenge she would not have been where she is today.
At 43, Hall, who was born with parts of her left hand and left foot missing, says she has seen it all and as she puts it “the worse in people”, but she was always a fighter and is now fighting for the betterment of disabled women.
“Women with special needs in particular,” Hall told Sunday Stabroek in a recent interview. “We are so vulnerable, if it wasn’t for my experiences in life and having my grandmother, mother, relatives and friends by my side… I see friends who didn’t have that and their lives are so different from mine.”
For the past two years she has organised a “group of bright women” and they are working towards making life better for women even though they are “struggling to penetrate funding.”
She strongly feels that any disability group must be headed by a person who is living with the disability as they would be better be able to understand what their members are dealing with.
“I really would like to see that targeted support. Guyana needs to learn about targeted support for special needs and persons with disability. It is available, it is done in other countries, even in Trinidad and Suriname… So we have good models right in our backyard because right now people are living by good will.”
Hall, who is the subject specialist in special education at the National Centre for Education Resource Development (NCERD), was awarded, on her second try, an Organisation of American States (OAS) scholarship to read for a degree in disability studies at Ryerson University in Canada. She had won another OAS scholarship to read for a Masters in online studies on disability at the Walden University in the US from which she graduated earlier this year.
But it took years and was a hard and sometimes very painful journey to get where she is today. As she puts it, during those years she saw the “worse in people.”
‘Trendsetters’
Hall always knew that education was the key to a bright future for her but she would be the first to tell that without her grandmother, Stella, and moreso her mother, Barbara, she would not be where she is today. Society, she says, never gave her a chance. Everyone around her and her mother suggested that she be placed in a home, but her mother refused to listen. It was because of her mother’s unadulterated love and her motivation, Hall said, that she can now look back at some her past experiences and laugh.
“One thing I could say is that my mother and my grandmother were the trendsetters because it was amazing that even though it was the era that was more closed—there was so much discrimination floating around—they just accepted me and never acted as if I had a disability,” Hall told the Sunday Stabroek.
While those two women knew nothing about affirmative action and political correctness, “I never heard them say Karen has a disability all they would say is we are taking Karen so we have to take the bike.” Initially, they did not know if she was academically challenged so they purchased graphic books for her, which she had no use for; they quickly realised that she could read and write like any other child.
In later days after her grandmother passed away in 1989, Hall said, life became very difficult for her. She still recalls with some amount of sadness, comments like, “Why you don’t leave the child in some institution and move on with your life?” which were said in front of her.
“They would say, ‘where Barbra and that disable child going? Why she don’t put the child in a home and get a man or something?’ In front of me and it was just so painful but not for long because my mother loved me and she always told me this and made me feel loved.”
She recalled the pastor of a church who decided that the best place for her was a home and without discussing the issue with her mother took both of them to a home with the intention of leaving her there. “My mother just said ‘please take me and my child home’.”
The message she got an early age from others was that she was hindering her mother’s life.
But “Mommy loves you,” were all the words Hall needed to hear from her ‘champion’ and all the painful remarks and experiences would disappear.
When she became older Hall said, a lot of what she had heard made some sense after her mother told her that she was the product of rape. Her mother had gone to help a woman and had fallen asleep and the woman’s stepson took advantage of her.
“… I always wanted to know why my mother, who was the nicest woman, would never talk to my father and whenever she saw him she would just walk on the other side, all I knew he was my father.”
There was no support from him and for her he “never existed to in a holistic way but in abstract he had a child, I knew who he was but we never had that relationship.”
Because of how she was conceived, Hall said some persons would tell her “my mother tried to throw me away [abort] and that is how I become disabled…”
‘Brutal’
When her mother died in 1998, Hall said, “It was brutal. It was like my whole heart was shredded to pieces. It was hard too because she was my champion and once she realised that I was interested in academic competence and developing a career in academics she was always supportive in every way.”
Her mother worked as a cleaner and later did house sitting for elderly people, but she had a rough life with little support from family and friends after her mother died, even though she did get some support from churches and some benevolent persons.
“She had to push me everywhere so she always had to take a job where she could push me to school and work around my schedule,” Hall said. Now when she hears parents complaining that they can’t do it, she knows they are not committed.
Because of her mother’s poor earning capacity, Hall said, they were unable to rent a place of their own and would move from one relative to the next. She believes they lived “15 different places in the city.” Sometimes they would only spend a month at a relative or a friend and whenever the going got too tough they packed up and left.
“I learned to live in corners, sleep on any surface, because we lived with people. Even though sometimes one member of the family [would be] open to helping us another member would be brutal,” Hall recalled sadly.
One experience that she can still recall was them being forced to leave the home of a lady who had become pregnant, because the woman’s sister did not want “her niece or her nephew to look like me…”
For most of her life, Hall lived with people, so much so that when she went to Canada to live on her own for the first time in her life, she did “not even know what was my favourite colour and how to set up a home; and there I was, having to decorate my own apartment.”
Hall said it was her goal to achieve academically that “saved my sanity…that once I persist and got my CXC then I can move on.” She said too that her mother’s brother, who taught her to read, played a major part in her life and this helped her tremendously.
“When I look back it helps me to have a different sort of sympathy for people going through similar lives, you know, I can recognise it. Because one of the things about being poor and disabled is that nobody sought to impress you, so you saw the realness of people, they really didn’t give a damn.”
She recalled a cousin who would cook food and never give her any (this was while she was a child) and would leave it out “go out and come back and check to see if I took any.
“But all of that served as a major motivation for me because I really wanted to come out of that situation. I wanted to live on my own I didn’t want to live with anyone.”
Her mother married when she was two years old, Hall said, but seven years later she was forced to leave because her alcoholic husband had become very abusive. Even though for the first five years it was all good, “following friends and drinking he became a mean drunk.
“But he never harmed me, which was kind of conflicting for me because he always treated me with such love and respect and then he would give my mother a burst lip. So it was tough for me mentally to see him treat my mother so roughly while he treated me so nicely.”
And for years after her mother fled, Hall said, persons would inform him where they were living and he would come “and throw a fit and curse…he didn’t want my mother but he didn’t want her to be happy.” Because of his behavior, many a time they were thrown out of where they were staying.
Her mother eventually married again but by this time Hall was an adult. Her mother subsequently moved to another country and with her not being there, life became more difficult and she took years before she graduated from the University of Guyana.
Straight to work
Because of everything she went though Hall said as soon as finished school she went straight into the workforce as an account clerk. That was another challenge because some persons made life very hard for her, while others just wanted her to sit around while they did all the work.
Because of this, Hall said, she changed jobs even though she had “battles” with a few persons, who upon seeing her after she applied for a job, would conclude that she would be able to cope.
“My mother took a lot of crap but I was determined enough, disabled or not, I not taking any. So for the first two years, I walked off jobs in two months – six months stages because I did not like the way they were treating me… I was very emphatic that I was not going to take shabby treatment….”
Those early jobs taught her to be assertive and working with different organisations Hall said she eventually learnt to be “strategically assertive and not be assertive for assertive sake.”
Today she wants to see more women in her position being more assertive and taking charge of their lives, but she also understands that sometimes everything works against persons with disability.
She feels the systems in Guyana around disability education are too rigid, Children with special needs to be catered for and wherever they are identified in schools accommodation needs to be put into place for them. She said for too long children with great potential are falling on the wayside because they are disabled and written off.
Karen hopes to one day soon own her home even though technically she has one in Linden, where she spent her formative life, as her grandmother left a “small house” for her. She hopes to one day turn that house into a halfway home for persons with disability who would have outgrown their parents’ but still need assistance. She hopes to do this in memory of her mother and grandmother.
“It is because of them I have not become bitter from my life experiences and even today their memories can still sooth me.”
On a personal note, Hall said romantic relationships have never worked out for her, “because I always had a tunnel vision for academics… And some of the men I met while they never said it, it was like I was there to make their lives better and I quickly realised that was not for me.”
