More Caring Caregivers

The most vulnerable members of society sometimes feel the greatest pain. Growing evidence suggests that people living with disabilities in Canada face physical, emotional, and sexual abuse at rates three times higher than the general population. The first step in changing the situation is becoming aware of the problem. While writing this article, the picture of my cousin’s son kept coming to mind again and again. His name is Ryan. He is a good-looking, bright, articulate, witty, and accomplished young man now attending Niagara College in St. Catharines. He was born with spina bifida. Growing up in a loving home has afforded Ryan the opportunity to flourish. It is unfathomable to think that other disabled Canadians may suffer at the hand of abuse. “While caregivers typically provide vital services and supports for people with disabilities, they are also responsible for much of the physical, psychological, and financial abuse that people with disabilities experience,” says Dick Sobsey, a professor of educational psychology at the University of Alberta and director of both the J.P. Das Developmental Disabilities Centre and the John Dossetor Health Ethics Centre in Edmonton. Sobsey conducts research into the relationship between violence and disability. “Studies of child abuse and violence against adults suggest that Canadians with disabilities become victims of violence and psychological abuse about three times as frequently as other Canadians.” Defining Disability Sobsey admits that rates of abuse among the disabled as reported in different studies are hard to compare because the definition of “disability” varies widely from one study to the next. For his work, Sobsey defines “disability” as an impairment of a physical or mental structure or function that results in a significant social disadvantage within family, community, or vocational environments. He defines “abuse” as neglect or physical, sexual, or emotional abuse. Sobsey points to Statistics Canada’s 2002 Participation and Activity Limitation Survey, where 12.4 percent of Canadians reported they are challenged physically or intellectually. This estimate may be low, as it does not include the disabled who live in nursing homes, institutions, extended care, and other health-related facilities because alternative housing is not available. At the Margins of Society In order to understand the scope of the problem, we need to be aware that people with disabilities too often function at the economic margins of our society. According to a 2003 Statistics Canada survey Canadians with disabilities are 50 percent less likely to finish high school or even enter the labour force. Unemployment statistics of employable disabled individuals stand at 38.7 percent, compared to 7.1 percent for the general population. Income is another large barrier. The majority of Canadians with disabilities live in households well below the poverty line, with a median household income of just $14,094 per year, 38.5 percent less than the median for other Canadians. “From these margins of society it is challenging for a person with disabilities to feel they have the power to prevent or speak out about abuse,” Sobsey says. “An individual who cannot walk or drive may find it harder to avoid or escape from a dangerous situation. An individual who cannot talk or use a telephone may find it more difficult to call for help or seek advice. These direct effects clearly increase the risk for some people with disabilities.” Taking a Stand One of the first steps we can take to prevent abuse of people with disabilities is to make more programs available to educate those with disabilities and their families, as well as teachers, police officers, and anyone with whom they come into contact. Parents can get to know everyone who works with their child and to watch for signs of abuse. Other proactive steps include reducing stress on parents and caregivers by improving access to existing resources, providing flexible family support, and screening staff who care for the disabled. For those of us who are not directly involved we can do just that: get involved. We can have a great impact by volunteering at a local group home or institution, or with one of the many nonprofit agencies that advocate for the disabled. Or we can make financial contributions and advocate for political change to provide the services so desperately needed. Likely the most significant help we can give, though, is to be the eyes and ears of the disabled community and report suspected cases of abuse to the provincial office of family and community services. While it is important to understand the numbers side of the story, in the end what is critically important is that we see disabled victims as individuals. They are not statistics. They are people just like my cousin’s son Ryan who need and deserve our help to live the best life possible. Defining the Problem Abuse is any act or behaviour that harms the person. Different forms of abuse include:

• Physical abuse is any rough treatment that causes injury or discomfort, such as slapping, pushing, or hitting. It may include over- or undermedicating and the use of physical restraints.
• Emotional abuse is any act that lowers a person’s dignity and self-worth. This may include regularly yelling at, criticizing, threatening, humiliating, or isolating the disabled person.
• Sexual abuse is any unwanted sexual act. This may include unwanted touching, kissing, or fondling.
• Financial abuse is any act involving the misuse of the disabled person’s money or property without their full knowledge and consent.
• Neglect happens when a caregiver does not properly care for and attend to a disabled person who cannot fully look after him or herself. Neglect can be intentional or unintentional. It may include withholding food, personal hygiene care, health services, clothing, help, or companionship.

Indicators of Physical Abuse  

•  fear of caregivers
• unexplained injuries
• delay in seeking treatment
• unusual patterns of bruises
• history of changing doctors
• scalp injuries

Indicators of Emotional Abuse

• low self-esteem
• appears nervous around or avoids eye contact with caregiver
• confused
• suicidal
• fear of abandonment

Indicators of Sexual Abuse

• unusual fear of abuser
• stained, torn, or bloody clothes
• pain and bruising
• change in sexual behaviour
• pregnancy or sexually transmitted infections

Indicators of Financial Abuse

• unexplained missing items
• failure to pay bills
• inaccurate knowledge of finances
• going without affordable necessities
• unusual withdrawals from bank account

Indicators of Neglect

• malnourishment
• wandering without supervision
• unkempt appearance
• missing eyeglasses or hearing aids
• untreated medical problems

Most victims of abuse and neglect feel depressed and anxious. Although no one should jump to conclusions, do take all of these indicators seriously. Who Might Act Abusively? An abusive person is usually someone the victim knows and trusts–someone with control and influence over the person with a disability. Abusers often isolate the victim from friends, neighbours, and caring family members. However, an abuser might be anyone. This may include:

• a spouse or family member
• a friend
• any caregiver
• staff in a facility
• a stranger
• a landlord

Some Reasons for Abuse and Neglect In a Family

• a stressful time in the family
• a cycle of violence exists in the family
• the abusive caregiver

- has a drug or alcohol problem - doesn’t understand the disability - has financial problems - must care for other dependents In a Special Care Home

•  lack of training
• overworked staff
• stressful working environment
• lack of communication

Nothing justifies abuse and neglect. How to Help Having a friend to talk to can make a huge difference, especially to someone who is socially isolated because of a disability. Break the barriers of social stigma by joining Best Buddies International. This nonprofit organization creates friendships between Canadians with and without disabilities at schools, universities, and in cities across North America and around the world. Volunteers with Best Buddies contact their disabled peer once a week and then meet for a one-to-one outing at least twice a month. Best buddies share the experience of having and being a friend from middle school on, helping children with disabilities develop the social skills they need to function successfully in the community and the workplace. The Best Buddy experience also helps change attitudes for people who choose to get involved. Dannielle Lamb, who volunteers with Best Buddies at York University says, “Before Best Buddies I knew little about working with people with intellectual challenges. My best buddy helped me feel complete joy and appreciation for the healing power of friendship.” Volunteer as a best buddy at bestbuddies.ca.