The monster that is the questioning of people’s disabilities has reared it’s ugly head again.
Time and again, people that should know better question our disabilities.
Yet, until they have walked in our shoes, they are not qualified to question our disabilities.
Professionals learn about the mechanics of a disease from textbooks and day to day contact with people with disabilities.
People generally only see the media perceptions of Dementia and experiences of the Palliative stage of Dementia.
They cannot learn the lived experience, they have to live that experience.
They cannot see hidden disabilities but we live and experience them everyday.
With all the stigma around disabilities, no one chooses to have a diagnosis of Dementia or any other chronic terminal disease or disability.
Examples of where the United Nations Convention on the Rights of Persons with Disabilities gives us a platform to advocate without our rights being abused.
Our rights under the United Nations Convention on the Rights of Persons with Disabilities include:
Article 1 says why there is a Convention on the Rights of Persons with Disabilities – to make sure disabled people get all their human rights and to encourage everyone to respect the dignity of disabled people.
Respecting the dignity of a person is recognising them as a person of equal worth to others. This means showing real respect for their feelings, views and privacy, and always treating them as an individual. This is the absolute starting point for human rights – for everyone.
Article 2 explains what different terms mean, like “communication”, “language” and “universal design”.
Article 3 sets out 8 general principles of the Convention. These are:
a) Respect for each person’s dignity and personhood – like other human beings, disabled people are not the property of other people. You have your own thoughts, feelings, ideas and plans which other people should respect;
b) All the rights in this Convention belong to every disabled person;
c) Disabled people are full and equal members of society;
d) Everyone must be respected. That people are different is a good thing that helps make a better society and world;
e) Every person must have equal chances in life;
f) There should be equality between males and females; and
g) Children usually gain more understanding and ability to do things and make decisions as they get older. There is no fixed age for this: it all depends on the individual child and what you want to do or decide. Countries that agree to this Convention agree to make sure everyone understands that children are usually able to make more decisions over time.
Article 4 of the Convention places a massive duty on governments to do everything they can to make a reality of all the rights for all disabled people living in their country.
Article 25 gives disabled people the right to the best possible health without discrimination. Governments should make sure health services understand the needs and rights of males and females. They must also:
(a) Give disabled people the same range, quality and standard of free or affordable health services as other people get, including services related to sexual and reproductive health
(b) Provide services that specifically meet the needs of disabled people, including children. This includes services that minimise and prevent further disabilities
(c) Provide services as close as possible to where people live, including in rural areas
(d) Make sure professionals give disabled people the same quality of care as non-disabled people, and that they understand and raise awareness of human rights
(e) Make sure it is against the law to discriminate against disabled people in health or life insurance
(f) Make sure it is against the law to deny food or fluids from people on the basis of their disability.
Article 26 is about the right to be independent and to be fully included in society. It sets out the things that government must do. This includes supporting participation and inclusion in all parts of society and making sure professionals get training to help them uphold the rights in the Convention.
Article 29 gives us the right to be active politically and to take an active role in society. It includes the right to be a member of a non-governmental organisation and political party.
Shouldn’t professionals be aware of the emotional and psychological damage that their inane comments cause?
Could they be bringing their profession into disrepute?
Should their professional bodies be doing more?
One thing is sure reader, Dementia is no longer a silent disease and people with a diagnosis will not be silenced by the ignorance and the negative narrative of others.