Raising awareness of autism, the need for volunteers and the barriers to accessing public programming faced by families with special needs children
Presentation to Social and Public Health Committee
by Kimberly Walker
June 15, 2004

Good morning Chair and Members of the Social and Public Health Services Committee,

Thank you for allowing me this opportunity to speak before you today on raising awareness of autism, the need for volunteers and the barriers to accessing public programming faced by families with special needs children.

Hello, my name is Kimberly Walker and this is the face of a child with autism. He is my son, Kamron. My focus this morning is on the myths and misconceptions about autism as well as the need for compassion and acceptance of individuals with autism. For those who don't know about it, autism is a complex, neurological disorder with a spectrum of impairments. Autism impacts the brain's normal development in areas of communication, social skills and sensory perception. Autism is not a mental illness. Children with autism are not unruly kids who choose not to behave. It is not caused by bad parenting. Autism has no racial, ethnic or social boundaries. Family income, lifestyle, and educational levels do not affect the chance of autism's occurrence. In fact, a child born in Canada today has a 1 in 195 chance of being diagnosed with Autism Spectrum Disorder. However, very few outside of those whose lives are directly touched by autism are even aware of its existence.

Recognizing that this wall of ignorance persists underlines the overwhelming need for volunteers. Many families hide their child out of fear of the public reaction and stigma, but that is not good for the child nor the community. Children with autism need interaction for their social, mental and physical well-being. Families like mine cannot afford to send a one-to-one worker to programs such as day camp or after-school care. Worker hours allocated through Special Services at Home do not remotely begin to cover the actual needs of our children. Nonetheless, the ministry has given municipalities a great tool in the form of mandatory volunteer hours for elementary and high school students. Lets use these students to increase the participation of children like my son who are otherwise unable to attend public programs because they cannot secure their own volunteer.

Hand in hand with the call for volunteers comes the need to address the issue of barriers in accessing public programming. A few months ago, I watched CH Talk Live at 5 with close interest. Councillors Murray Ferguson and Tom Jackson discussed opposing views on the privatization of golf courses and how it might lead to a 2-tier level of access, discriminating on the side of those who could least afford it. I'm here to tell you that is already the case with public programming at recreational facilities across Hamilton. The barriers in attitude, policy and practice against the disabled are very real, very frightening. No one should have the right to refuse service or enforce discriminatory restrictions based on a disability but that is exactly what continues to happen.

In my March and April meetings with the senior staff at one particular centre it was argued that there is a line between being service providers and care givers. When it comes to dealing with children, there is no such line. They refused to go to the door to meet the DARTs or any other bus despite the fact the wheel chair accessible door had been broken for close to a year. Their stipulations that a child has to be self-sufficient, able to enter and leave the facility independently in order to attend open programs, is discriminatory against a wide range of children with disabilities.

When their severely punitive decision for a minor incident was appealed, senior staff became confrontational, unreasonable and threatening. They even justified the violation of my child's basic human rights without apology or remorse. While the decision against my son was over turned, there are still many more cases of service denied based on disability. Many families are so disgusted by the attitudes and arbitrary policies that they give up trying. We are forced to accept minimal allocations of programming or find alternate programs because we are told the demand is too great. Since the demand is increasing then the logical route would be to add, not decrease support.

In conclusion, educating the public is an ongoing process that requires an effort from the entire community, not just specific interest groups and family members, but also schools, government, the media and you. Through staff training, adding more supports and removing the barriers we can eliminate misconceptions and assist people with invisible disabilities like autism. Lets give them the validation and acceptance they deserve, as we would any other human being.

Thank you.