Many people with dementia or their families and care partners do significant amounts of unpaid work for their own self advocacy, or for advocacy and many other organisations.
DAI as an organisation, and one I am truly proud to be a co-founder of, does this as well. DAI provides speakers for conferences, events and publication launches, runs focus groups, our members give professional lectures, connections for researchers, and is now a major platform for those without dementia to engage with people with dementia, in a large number of countries for research or other engagement.
People with dementia add positive value to organisations, and are also contributing significantly to global change through their own advocacy and activism. Yet no-one with dementia is financially rewarded for their time, their expertise, or compensated for the fact they are used for marketing and fund-raising purposes.
Often, many of us have fully or partly paid for the ‘privilege’ of inclusion.
Article 19: Living Independently and bein included in the community, and Article 29: participation in political and public life, along with many other Articles of the Convention on the Rights of Persons with Disabilities confirm organisations should be making reasonable adjustments for this, and funding us fully to attend. Many other Articles of the CRPD apply to people with dementia, and to date, they are ignored.
Inclusion and participation, for people living with acquired cognitive disabilities caused by any type of dementia is imperative to reduce the isolation, stigma and discrimination, and it is a human right.
However, many of us have been discriminated against by employers and are no longer employed, and we are being discriminated against by advocacy and other organisations, who refuse to pay us for our time or expertise, especially when all other consultants and many speakers are paid for their time and expertise.
It really is time for a wake up call for those who don’t see value of engaging with us, including financially rewarding us for our contributions.
My dream is that sooner rather than later, people with dementia will never agree to give their time or expertise away for free.
That is part of the problem, as clearly, there is a new diagnosis of dementia every 3 seconds somewhere in the world, so organisations will always be able to find a ‘novice’ advocate, who has not learned they will be ultimately be undervalued.
The less you are paid, the less you are valued. If we didn’t bring value, organisations and researchers would stop asking us to engage with them, or to speak at their events.