Nothing without us on International Women’s Day

Nothing without us on International Women’s Day

8 March 2019

On International Women’s Day, Kate Swaffer reflects on the rights of women with dementia which she championed along with the rights of all people impacted by dementia during meetings on the Convention on the Rights of Persons with Disabilities.

By Kate Swaffer

Last June I attended the 11th session of the Conference of States Parties to the Convention on the Rights of Persons with Disabilities (CRPD) and preceding Civil Society Forum on the CRPD, held in New York, representing the 50 million people living with dementia, and I am one of them.

The 11th Session had a sub-theme of the rights of women and girls with disability. The impact of dementia on women as a disability has been a key thematic focus for Dementia Alliance International, Alzheimer’s Disease International and the Global Alzheimer’s & Dementia Action Alliance, because women worldwide are disproportionately affected by dementia.

More women than men live with dementia, and women and girls provide the majority of unpaid care and face the greatest stigma.

The stigma surrounding dementia exists universally, with women more likely to be stigmatised in this way. Extreme forms of discrimination can lead to women with the condition facing abuse, violence and even death. Older women, especially widows, can be exposed to what has been termed a ‘triple jeopardy’ discriminated against as a result of their age, sex and condition (carer or diagnosed with dementia). Intersecting forms of gender- and disability-based violence, exploitation and abuse against women with disabilities can include forced medical and psychiatric interventions. Women with disabilities experience this type of abuse at disproportionately higher rates than others, and in unique forms owing to ingrained discrimination and stigmatization.

Women make up two-thirds of dementia care supporters and more than 70% in lower and middle-income countries. Unpaid women carers, compared to male carers, are also more often unemployed due to their unpaid role; girls who are carers also miss out on education.

To understand the state of women with disabilities, especially in low and middle income countries and remote communities, we need to collect high-quality disability statistics and disaggregate data on age and disability status. Many national health systems exclude the collection of data on their citizens over the age of 60, others only report data to age 49, and less data is collected on women and girls than on men. We also note that the disability due to many forms of dementia; especially Alzheimer’s disease often only diagnosed in later life, results in likely undercount of disability and access to rights redress.

Dementia is listed by the WHO as the fifth highest cause of death for women worldwide and is the leading cause of death and disability in older persons. Ensuring the disaggregation of data includes disability status, as well as sex and age, is needed to inform policies to ensure their effective inclusion and the full realization of their human rights. Governments, international civil society and partners around the world must get behind this global challenge and unite for a world where no woman is left behind because of her dementia.

International Women's Day logo

Kate Swaffer is Chair, CEO & Co founder of Dementia Alliance International (DAI) the global voice of people with dementia. Kate is also a board member of Alzheimer’s Disease International (ADI), on the Steering Committee of Global Alzheimer’s & Dementia Action Alliance (GADAA); and a member of the World Dementia Council.

Read Kate’s further reporting from the 11th session of the Conference of States Parties to the CRPD:

Leaving no one behind

The overarching theme of the 11th session of the Conference of States Parties to the CRPD was ‘Leaving no one behind through the full implementation of the CRPD’. Working with Dementia Alliance International members, I collected content for my presentation statements, and data from Alzheimer’s Disease International and the Global Alzheimer’s & Dementia Action Alliance – I was representing all three organisations. Here are some of the wider key messages I took to the Conference of States Parties and Civil Society Forum, to represent the voices of people living with dementia.

No one should be left behind through the full implementation of the CRPD, including people with dementia. Yet most people, even in civil society do not yet see this condition as one that brings with it acquired cognitive disabilities. People with dementia are systematically excluded from rights-based and equitable inclusion; the barriers are far more than dementia. The real barriers are due to stigma, discrimination and misperceptions about the capacity of people with dementia, and many breaches of our most basic of human rights.

Greater funding needed to enable equal participation of persons with disabilities

Inclusion continues to be a ‘tick box’ experience, and very often, self-advocacy requires significant self-funding. Governments, member states, NGOs, DPOs and wider civil society need to consider their responsibility to provide the financial support.

Financial support is often needed to enable people living with dementia to attend meetings and conferences on these and other matters affecting them, in line with ‘Nothing about us, without us’. (Interestingly, during the forum events someone shortened the phrase to ‘Nothing without us’, which was then repeated regularly throughout.)

People with dementia, and other disabilities, not only ask to be invited, but for appropriate funding from governments, NGOs and organisations for persons with disabilities to ensure and enable our full and equal inclusion and participation. This is undoubtedly our legal right.

Monitoring implementation and progress of the CRPD

People living with dementia have the same rights as persons with other disabilities, and we must move away from the medicalisation of dementia and instead view it through the lens of acquired disability. All State Parties to the CRPD are committed under international law to include persons with dementia in implementation of the convention.

Access to the CRPD is an essential right for all people living with dementia however there is limited evidence this right is being realised. Yet still many with dementia face abuses and violations of their basic rights. This can range from a lack of access to health services, to a culture of discrimination and even violence against those with the condition. Gendered barriers to mobility and accessing justice lead to isolation and exclusion. People living with dementia everywhere must be supported to claim their rights as human beings with disabilities.

During my speech I asked the CRPD Committee and Member States to include people with dementia in the implementation and monitoring of the CRPD, including women. Women with disabilities are often excluded from national laws and policies and remain marginal to global discussions and agreements relevant to their empowerment. The global women’s agenda seldom takes into consideration the issues and concerns of women with disabilities.

Future CRPD conferences need to be accessible to all

Participating in the conference meant long days. It was necessary to arrive at security most days by 7am, as many pre meetings, round table discussions and side events started as early as 7:30am running through to 8pm. Working my way around these two events was physically and cognitively hard work.

To have a voice, it was imperative to attend as many sessions as possible, and even to hold my hand up for long periods of time, to be able to make even a brief statement to bring dementia into to the discussions.

Despite the conference addressing the rights of persons with disabilities, unless you were in a wheelchair, hearing or sight impaired, it was not supportive of most other disabilities, which I thought incredibly ironic!

No one should be left behind through the full implementation of the CRPD, including people with dementia. I also look forward to the day when we no longer have to define people by disability, and we are all treated equally.