The origin of the slogan, “Nothing About Us Without Us,” has long been discussed since it was first used in the early 1980s by disability rights groups.
It is often attributed to Southern African disability rights groups but some South Africans recall hearing it first from Eastern Europeans at disability rights conferences.
You may not be aware reader, there is a Polish law of 1505 that translates into this slogan, meant to establish that the King could not pass laws without going through Parliament which has long been used as a touchstone of democracy there.
It was re-launched and well-publicized in the early 1980s by the Solidarity movement of Polish laborers.
It is possible that Eastern European disability activists introduced this rallying cry to international meetings, where it may have found particularly deep resonance in South Africa’s fledgling movement to include disability activism in the struggles against apartheid.
Recently, it has become the rallying cry of people living with Dementia as well and hijacked by the Global Disability Summit last month.
In the early stages of Dementia we may have seen the treatment of people at a later stage of Dementia or experienced the lack of state funded post-diagnosis support, benefits and services and the negative impact on our lives.
We will have experienced the inequalities between diseases and it is our right to raise awareness, to be heard and to participate in public life, which includes the decision making process that affect us.
The figure quoted for the number of people with Dementia, 850,000 is based on the official 2014 figure by the time of the next General Election, 2022 I think, that will be over a million, just over 1 in 70 of the population.
If you add other disabilities to that, you have a powerful voter group, who campaigning together can bring disability abuses to the fore of the next General Election Campaign.
In relation to Dementia and in it’s basic form it is a statement that nothing should be decided about our lives with Dementia without involving us in the decision making process.