Shut out - the importance of appropriate and accessible information for people with disabilities and
Information is the key to our understanding of ourselves and the world around us. It enables us to define, understand and have the power to make decisions and bring about positive change. With information comes knowledge and with that we can achieve anything.
“Knowledge is power. Information is liberating” Kofi Annan
For many individuals with disabilities and their families in Belize there is a lack of timely, appropriate and accessible information.
This lack of information lasts from pregnancy through to old age:
a lack of antenatal support to the parents in how to positively prepare for their child
lack of diagnosis at birth and beyond, lack of information about how to support a child with a disability in their early years of development
a lack of information across education provision, from knowing how to support the inclusion of pre-schoolers with disabilities through to accessing university
lack of information for health care professionals in how to positively support an individual with disabilities to access health care
a lack of information for teachers and parents in how to support an individual with disabilities through puberty and relationships
a lack of information for individuals, their parents and businesses on how to support an individual with a disability into work
a lack of information for leisure providers on how to support the inclusion of individuals with disabilities and so on….
Imagine if there was a barrier to every milestone in your life.
Many of us tend to ignore disability unless we have a personal connection such as a member of our family, assuming that is something that does not concern us. Disability is part of the human condition. Almost everyone will be temporarily or permanently impaired at some point in life, and those who survive to old age will experience increasing difficulties in functioning. Most extended families have a disabled member, and many non-disabled people take responsibility for supporting and caring for their relatives and friends with disabilities.
A person’s capabilities depend on external factors. For an individual with a disability and their family access to appropriate and accessible information about the person’s condition and how they can be supported to lead a healthy, happy and fulfilled life is vital. Where possible, access to information needs to begin during pregnancy or as soon as the mother is aware that her child has a disability.
Supporting parents to understand the condition their child experiences, how they as parents can support their child and what external support is available can make all the difference. This gives parents a positive start to their life as a family. Without this information parents are left feeling uncertain, worried and isolated often leading to parents apportioning blame to themselves and each other resulting in poor mental health of family members, family breakdowns and many children with disabilities taken into care homes.
Access to information must continue throughout an individual’s life supporting them and their family through each milestone from initial child development, preparing for school and supporting achievement in school, puberty and relationships, transition from school to further training, education or work, having a family, getting a house to old age.
At every stage, the information provided needs to be holistic and of enough substance so the individual and their family/circle of support can make informed choices that will enable the individual to lead a fulfilled life.
“Information provision to individuals and their circle of support is a fundamental foundation for empowerment…Support for the child starts with the family, and a better informed and supported family will provide a better platform for their child.” Recommendation 8, Regional Disability Conference, October 2016
For society, information about disability that is positive and inclusive is as important. Without information, we know that communities can develop lack of understanding and fear which can lead to discrimination, prejudice, deprivation of human rights and abuse. Without access to information, depriving a person with a disability of their human rights could be unintentional. For example a bank or healthcare centre not providing a ramp for a wheelchair user to access the premises or accessible toilet so they can go to the toilet. Imagine for one minute that the only toilet you could use was that in your home, limiting you to only being a short distance from home at any one time.
Today the world benefits from quicker and more complex communication systems, however the flow and access to these is not equal within societies.
Let us open the door to individuals with disabilities and their families, so they are no longer shut out and unable to enjoy the opportunities they deserve.
“Change will not come if we wait for some other person or some other time. We are the ones we've been waiting for. We are the change that we seek.” Barack Obama