Stereotyping, stares, blunt comments and questions from well-intentioned and curious individuals are part of life for anyone with a disability
We have all felt ostracized and labelled. Instead of being called by our names, we are called "the person with the limp," the boy in the wheelchair" or "the lady with the walker." We are identified by what is the most noticeable about us. It is not our eye colour, hair type or stature, but the feature that stands out the most in others’ minds: our disability. Nobody likes to be stared at, and for us, it is beyond our control. Unlike certain people who deliberately make themselves look different with dyed purple hair and multiple body piercings, we look or walk the way we do because we have no control over what makes us different.
People ask us if we are wearing artificial legs when they notice orthodics. In very ordinary situations such as our work life, we appear exceptional or even saintly. "It is amazing that you can put in a full day’s work like the rest of the staff and never get sick. How do you do it?"
Four adults with spina bifida and/or hydrocephalus reflect on their experiences and share their feelings about society’s attitudes toward them. They also reveal how they have empowered themselves to assert their rights and speak up when they have faced discrimination, unfairness or ignorance.
Christine is in her 20s. She recalls an experience at work a few years ago that gave her a perfect opportunity to stand up for her rights and educate others. She was employed for three years when the company changed its health insurance policy. New forms detailing her medical history were required. As requested, she revealed having spina bifida and hydrocephalus. Shortly afterwards, during a meeting with her company doctor, she was told that she could no longer perform and was advised to leave.
Realizing the unfairness of the doctor’s actions, Christine explained that she would pursue the matter further with her lawyer. The doctor was taken aback. Being assertive and standing up for her rights enabled Christine to keep her job.
Surprisingly, even some health care professionals are unfamiliar with spina bifida and hydrocephalus issues. This was particularly evident when Christine was about to give blood. A nurse informed her that, unfortunately, she could not because she could very easily pass on her spina bifida to the recipient.
"My blood type is one that is in constant demand and I was only trying to be helpful. I was stunned and walked away," says Christine.
Christine believes that people’s attitudes toward disabilities have changed considerably. In fact, more people with disabilities are out in the public, going shopping and to the movies, "doing ordinary things," so this much-needed awareness has been raised. However, people need to be made more aware of the hidden disabilities. All people have abilities and disabilities. Disability is not all or nothing. Many people are in between, particularly with spina bifida and hydrocephalus.
Claudette, 49, remembers vividly growing up in North Bay, when accessibility was minimal. There were no ramped curbs or sidewalks. Those in wheelchairs needed someone to push them over the curbs. "Now it is so much easier to get around," she says. During her childhood, her parents never treated her differently. They gave her chores and responsibilities just like the rest of her siblings and constantly fostered her feelings of independence. At school, teachers and students were always helpful. On the way to school her friends pulled her in a sleigh through the snow and carried her books. At times, the older (male) students even carried her up the school’s stairs.
However, as an adult, Claudette has faced prejudice and exploitation. She recalls an incident in a restaurant. As she walked by, others were staring at her and once she realized it, she became even more self-conscious. Consequently, she continued to trip over the chair. The people did not stop watching Claudette until her friend said, "We give out pictures, too!"
In situations where she feels she is being made a spectacle, Claudette finds it helpful to confront the offending individual head-on. "I can usually pick up vibes by the expressions of others when they are looking at me in an unkind way," she says. For Claudette it is extremely important to try to find ways to get over the barriers that she occasionally faces and not to keep her feeling inside.
Claudette would like to see more media coverage of spina bifida and hydrocephalus. She believes that there is not as much stereotyping today and people are more open-minded about disabilities. "It used to be that we were all institutionalized, but now we can live independently in our own homes, just like everyone else," she says.
Sally says that, looking young may be a blessing for many of us, but for her it is a curse. Once while travelling on para transpo (Ottawa’s accessible public transit system), the driver thought that she was a 10-year- old boy and asked "if her mommy was home" when she was going to her own apartment! People constantly ask her if she needs help and give her money for ice cream - sometimes as much as five dollars! Many are surprised that she lives by herself, amazed that she can talk and is intelligent.
Sally thinks that society often views people with physical disabilities as having a mental disability or below average intelligence. "Like the rest of society, the media need to gain awareness too. They often focus on the disability, rather than the person and their particular story." She adds: "The media need to realize that if you are good at something, you are good at it, disabled or not."
Chris is in his 30s. He says that society has stereotypical attitudes of differences in general. Usually disabilities are mentioned in sports, while those in day-to-day activities, such as going to work, are ignored because they are less visible. As for his own experiences, he finds that people speak to him more loudly as though he were deaf. Also, when he tells them that he has spina bifida, they usually ask him if it is a disease. He thinks people’s perceptions are altered by those who use a wheelchair or walk differently. "Those who walk with a limp are stared at for walking funny, while those who are in wheelchairs are largely ignored and considered in the way," he says.
Chris shares his solutions for overcoming the barriers that we may encounter: "try to mix with those who are disabled and those who are not. Reach out to others. Don’t always expect them to approach you first and often they will include you. Allow those who are curious to feel comfortable to ask questions to clear up any confusion they may have about your disability."
Advice for those who do not have disabilities is simple: Labels are for envelopes and packages. We are people first, so if you must label then label us able.