Published in TRU Journalism student magazine "12 Tales from the Edge" in April 2011
Imagine that you have almost no control over your own body. Neither your hands nor your feet do what they’re supposed to do. You’re smart, but you can’t hold a pencil to write your thoughts, and when you speak, others have difficulty understanding you. You’re often underestimated. You’re in a wheelchair and you can’t walk over to someone and strike up a conversation. You have to wait for others to come to you, but they often don’t. Would you give up? Many do.
Often, I find myself lying in bed, drifting off to sleep as the darkness of my room envelops me. My arms can suddenly feel as though a boa constrictor is tightly coiled around them and at times it takes over my whole body. I attempt to move every which way to relieve the pain but my brain is unable to tell my body to relax. As I’m straining and stretching, I want to escape. I’m caught in a straight jacket that pulls my arms in tightly. Sometimes I call out to Mom for her to come. She has to use all her strength to relax my arms. Tears trickle from my eyes out of a combination of frustration and pain, like a tap left dripping, a continual flow of water droplets.
My room, usually a bright, refreshing place, quickly becomes a darker place where I am sucked down into a deep, dark hole. A war begins between my body and my mind. My body will not respond. Loneliness grabs a hold of me. I can’t see anything, like I’m walking into a deep, dark forest and don’t know where to turn or what to do. Clawing and scrambling and not getting anywhere. The pain is excruciating; a continual surge of electrical shock courses through my body. I attempt to fight the battle inside my head, to relax myself, but it elevates and takes over whenever “it” feels like. Mom puts her head down upon me until my body relaxes and I fall asleep.
I have various strategies that help me cope, but I have always wondered how others cope or what they experience. I made the decision to head out on a journey to discover not only how people with disabilities get through difficult times, but also the various perspectives of caregivers and educators.
Robin DeWolf’s home is warm and inviting. A collage of black and white photographs of her family hangs in the entrance way.
DeWolf works as a caregiver, providing room and board in her home for women with disabilities. You see them out and about, shopping and participating in as many social activities as possible. They have become a part of her family.
DeWolf has a bubbly and vibrant personality; always upbeat, she loves taking care of people. She has been a caregiver since 1998, but her experience working with people with disabilities began back in 1973 when she worked as a secretary for the Canadian Paraplegic Association. This is where she met her future husband, Scot DeWolf. Scot was injured in a 1966 car accident that left him a paraplegic. Together the couple eventually relocated to Kamloops, when Scot became a counsellor for the B.C. Paraplegic Association.
“He loved being able to help people when help was needed,” Robin said, and he liked to stand up for people with disabilities, acting as an unofficial spokesman. Scot has since passed away from cancer, but Robin continues to work with people with disabilities and to advocate on their behalf. She believes it’s important to “be on the ball” when caring for others; to her it is not “just a job.”
“We are helping,” DeWolf said. “We must treat them with the utmost respect that they deserve.” She feels many people may get into the caregiving profession for the wrong reasons. “To be honest, for the people who just look at them as anything less—you need to look for another profession.”
DeWolf says it is important for people to focus on significant events like celebrating birthdays and special holidays, especially when working with people who are initially told they “won’t make it,” because of the severity of their disabilities.
She also said she feels strongly that it’s important to get input from family members and previous caregivers when working with new clients to ensure she knows what each person needs. “They are full of knowledge . . . we need to respect that.”
DeWolf recalls Scot often becoming frustrated with people who did not know him well enough to respect his personal space. They might pat him on the head and touch him, as if he were a child. Scot handled it well, she said, but she would hear all about it once they got home.
Trisha-Lee Rhode, a 3rd year Social Work student at Thompson Rivers University, is passionate about making a difference. Rhode injured her spinal cord in a fall from a balcony 11 years ago. She became a paraplegic and at first she was overwhelmed, feeling worthless. Once she recognized that she could contribute to her own care and recovery she gradually became more independent and confident.
After her accident, Rhode needed to rediscover who she was. One time in particular, Rhode had fallen from her wheelchair to the floor and needed her Mom’s assistance getting back into her chair. Being of small stature, Trisha’s Mom struggled to lift her off the floor. Both of them became frustrated and at a particularly intense moment of arguing, her Mom blurted out “Trish, I need your help.”
Those words transformed her. “I can contribute, I can do something. It was an awakening for me, I was needed,” Rhode said.
From then on, her Mom gradually allowed Rhode to become more independent by slowly encouraging her to try to do more on her own. In this process, Rhode began to realize that she had more control over her independence and that she could accomplish more and more tasks. She said her Mom’s support and encouragement “helped to build on my self-worth, helped me to feel more capable.”
Rhode believes that we are all different and have different sets of abilities and skills. “We’re all different and we’re all similar, it’s just to a varying degree.” For example, Rhode says, she has become “quite inventive” at accomplishing various tasks. “I have a set of skills other people don’t have.” In the beginning, she focused on being “dis-abled.” She believed initially that her disability left her unable to do anything. “I was very much in the disability,” she said.
Rhode believes that the same rules should apply to people with disabilities as to those without disabilities, such as respecting personal space and asking before assisting a person. If you use a wheelchair as your mode of transportation, the chair becomes part of your body: “The wheelchair’s simply an appendage, like an arm or a leg.”
When asked what it’s like living with a disability and not letting it define her, Rhode said she believes the public should try to focus on the “person” rather than the “disability.” She has also learned to take her own advice.
Rhode faces challenges daily. Getting in and out of buildings can be frustrating, especially when elevators are not working or when there are no curb cuts or ramps. It’s often hard to see over a business counter. And since Rhode relies on public transit, it can be a challenge at times because often she is unable to arrive at her destination on time. Her schedule has to be arranged around transit schedules.
It seems impossible to have a spontaneous lifestyle, she said. Rhode refers to what she calls “systemic discrimination or systemic obstacles” that she described as “built-in rules and regulations that we cannot meet because of our disabilities.” She went on to say that these obstacles make her “feel disabled.” She added: “I do not blame the individual, I blame the situation and the system.”
Not only does Rhode believe the public should avoid making assumptions about people with disabilities, she also believes it is important for those who are disabled not to assume those who assist them always know what they need. It’s important to let others know what you need in order for them to assist you, she said. “The squeaky wheel gets the grease.”
Rhode overcomes challenges by being an advocate for others and working for needed changes. “I speak up,” she said. “I make a stink.” She’s determined and urges everyone with a disability to get involved and advocate for progress.
On the wall in my bedroom hangs a framed painting of a deep purple flower with hints of green and a bright yellow centre. At first, Adria Tillen, a graduate of the Human Service Worker program at TRU, had difficulties sharing her story. The flower, with its bold colours, is in full bloom. Tillen is now opening herself up and becoming more comfortable sharing her story. When I look at this painting she gave to me years ago as a Christmas gift, I am reminded of how far she’s come.
When Tillen feels inspired, she’ll find a comfortable, quiet space, kick up her feet and lie back with sunlight beaming in through the window. She waits to put brush to canvas until she has a definite picture in her mind. Although she uses bold colours in her paintings, watching her paint you can see her brush strokes are careful and precise. Sunshine yellow, earthy browns and royal purple—all colours that reflect her bold and brave personality.
Her hair is done up in long, blond dreadlocks and braids, and her easy-going nature makes you want to know her better. You’d certainly never guess that 11 years ago she was diagnosed with a “mild case” of paranoid schizophrenia. As a result of her illness, she finds it difficult to control her thoughts, which often, she feels, are not her own.
“The thoughts that come as a result of this illness are not ones that I can change, and so to respond as if they are mine is a battle that can’t be won.”
Tillen realizes that she can take some responsibility for her attitudes and judgments but she finds it difficult and often frustrating to live with these challenges. She has come a long way, however, since her diagnosis. For instance, although one of her major challenges is making decisions, she’s getting better at it over time. By having a strong faith, seeking support from family and friends, taking her medication regularly to ease the severity of her symptoms and gradually becoming more comfortable sharing her story, Tillen has found ways to deal with the difficulties she faces. She does not let her illness define her.
While she is not involved in any support groups specifically for those who have schizophrenia, she does have a strong faith and gains most of her support from that. She realizes that it is important to be heard in order for others to understand what she experiences and says she has learned much from the people around her. “I feel like people in some cases may be able to teach me something about not giving up on my dreams or living a life without borders and having a voice that cannot be silenced. I think we all need each other.”
But Tillen feels most empowered when she’s sharing her story with others because she was initially afraid to do so, fearing the label “mentally ill.” When her uncontrolled thoughts are less intense and when she can remember small details such as someone’s name, phone number or address, she also gains a sense of empowerment.
Tillen can often feel frustrated, however, because she tends to set certain standards for herself and others, such as “confidence to learn and adapt” and the skills needed “for crisis intervention and problem solving,” but she is often unable to meet these standards herself. She used to be concerned with how others would perceive her, but by sharing her story she has come to realize that people are generally supportive.
Grant Larson has been a Social Work professor at TRU for a number of years. He easily engages his students and is confident in his teaching style. Larson has a unique ability to make dry, boring class material interesting. He also makes difficult topics easier to comprehend. In his classes, Larson is inclusive and ensures all students have the equal opportunity to express their views. He is passionate about his job. You would never know that at one time he feared he would be unable to continue his profession.
At about age 40, he began to experience hearing loss, and over time the loss gradually became more profound. He first noticed that he was losing his hearing when he was unable to hear certain sounds. “I didn’t hear birds sing at all,” he said. “And I couldn’t hear any high-pitched sounds. Our BBQ would make this screeching noise … my family would come running out and say ‘Turn it off!’—and I couldn’t hear any of it.” This began to affect him in social situations and he gradually withdrew.
Larson experienced one incident years ago that made him realize he hadn’t heard most of what had happened in his class. “I actually for a moment thought ‘I can’t teach anymore because I can’t hear and how can I teach if I can’t hear?” Since then he has found ways to avoid these kinds of situations, such as asking students to sit near the front of the room. Reflecting back to that day, Larson admits “that was sort of a bad moment . . . a frustrating moment. I don’t have a lot of those.”
Larson does not want to be viewed as “disabled,” though for many years he himself struggled with this view. Being established both professionally and personally helped him see past his disability: “In some ways I defined myself before I had a disability. I already knew who I was and I was confident in that, I’d been educated and had a career.”
Since his disability is non-visible, Larson feels that people tend to forget that he has a hearing impairment. They can at times make assumptions about what he can or can’t hear, he says. “There’s no natural tendency to accommodate that.” At times, Larson feels others may think he has “selective hearing” instead of a hearing impairment.
He says he derives his personal strength from his family, close friends and his strong sense of self. He is not “a hard of hearing person,” and says “I’ve become someone who has a different set of abilities.” Larson was surprised to discover that he acquired a new ability because of his hearing impairment. On a visit to his audiologist he learned he had gained the ability to hear words by lip-reading. He found it fascinating to learn that his brain could “re-create sound.”
Over time, Larson has become more comfortable with his disability and now feels ready to share his story openly with others. He uses a hearing aid, which has helped to empower him to continue doing what he loves to do.
Jeanette Robertson’s passion for working in the disability field began when she was growing up in the late 60s and early 70s. “At an early time I realized that I had some passion and some compassion,” she said. A childhood friend of Robertson’s had a sister with cerebral palsy and through this friendship Robertson noticed that society was not very inclusive: “She wasn’t included in society very much.” A Social Work educator at TRU, Robertson teaches an introduction to disability course. She focused her post-secondary education on disability and gained many years of experience working with people living with disabilities. Robertson feels that a key factor in becoming a social worker is having an open mind and the right attitude.
It is important to avoid making assumptions regarding people with disabilities, Robertson says. “They are citizens, they have a basic right to be entitled to services and treatment of respect by others … It’s a human right, it’s not a charity right.”
Robertson says that many new students are often unaware that most of the time it is not an individual’s disability that creates challenges. “The disability is not the worst thing in that person’s life,” she said. “It’s the attitudes, the barriers, the exclusion.” She emphasizes that “people with disabilities are not a homogenous group.” Each individual’s experience is different and “there is such diversity within disability, and that is something that has to be emphasized.”
When it comes to public perceptions about disabilities, there appear to be two extremes: victim and hero. “Perceptions can be quite limiting,” Robertson said, adding that many people are “educated through popular media,” and because of this, there is a misperception of “the hero and the victim, living this horrible existence.”
She believes “there needs to be more of an in-between kind of perception, for people to see more of a normative sense and see a person with a disability as a person, without (seeing) the disability first.”
Throughout my journey, I discovered that people were open and candid and I felt privileged and honoured that they were comfortable sharing their lives with me. I found some common threads that ran throughout the stories shared: these people do not allow their disabilities to define them.
Often the public can make assumptions, but everyone wants to be treated as a person first. I also recognized the diversity within their stories. Although I have worked on many different projects, I believe still more needs to be done to share these stories and I hope to continue to do this work. During my interviews, I learned a fair amount from these individuals. It was an enriching experience and they inspire me to pursue my goals.
I hope they feel the same way.