Following immediately upon the celebration of the Jubilee of Teenagers (25th-27th April) are the days dedicated as the Jubilee of People with Disabilities (28th-29th April).
For many years Alison Davis worked for SPUC, in their division that advocated for people with disabilities and their families. Alison's obituary at the Catholic Herald website describes a life marked by serious physical disability. Whilst Alison is probably best known in Catholic circles for her work with SPUC, there are a couple of other aspects of her obituary that I think are worth noting.
The first is Alison's determination as a young adult to live as normal a life as possible, even though she had to use a wheelchair. Perhaps the thing for us to note today is that, though it might be necessary to use aids and medication in order to do so, a person with a disability is still able to live life. The need to live life in a way that is different than it may be for others is not a denial of that capacity to live life.
In 1987 Alison met Colin Harte, who became her companion and carer for the rest of her life. The person with a disability is an opportunity for the other to express their dignity as a person who cares; there is a reciprocal relation between the two in the act of caring. Whilst in the lives of Alison and Colin this reciprocal relation is seen at an individual level, it should also express that relation at a societal level in the like situations of others. As Pope Francis' indicated in the Bull of Indiction for the Jubilee 2025 n.11 (my emphasis added):
Inclusive attention should also be given to all those in particularly difficult situations, who experience their own weaknesses and limitations, especially those affected by illnesses or disabilities that severely restrict their personal independence and freedom. Care given to them is a hymn to human dignity, a song of hope that calls for the choral participation of society as a whole.
Still Alice is the title of a book by Lisa Genova, which became a successful film with the same title. The book/film tells the story of a professor who begins to suffer from early onset Alzheimer's, from the perspective of her own experience. It traces the gradual progress of the disease and its different effects on her family members. My own review of the film when it was released to cinemas can be found here: Film Review: Still Alice.
In one scene towards the end of the book/film, with Alice already significantly affected by her Alzheimer's, she presents a talk to a conference of professionals involved in the clinical care of people experiencing dementia. It reads, as does the entire book/film, as a manifesto for those who experience dementia. There are excerpts from this talk at the very end of this trailer for the film.
We, in the early stages of Alzheimer's, are not yet utterly incompetent. We are not without language or opinions that matter or extended periods of lucidity. Yet we are not competent enough to be trusted with any of the demands and responsibilities of our former lives. We feel like we are neither here not there, like some crazy Dr. Seuss character in a bizarre land. It's a very lonely and frustrating place to be....
.... My reality is completely different from what it was not long ago. And it is distorted .... I struggle to find the words I want to say and often hear myself saying the wrong ones. I can't confidently judge spatial distances, which means I drop things and fall down a lot and can get lost two blocks from my home. And my short term memory is hanging on by a couple of frayed threads....
Being diagnosed with Alzheimer's is like being branded with a scarlet A. This is now who I am, someone with dementia. This was how I would, for a time, define myself and how others continue to define me. But I am not what I say ro what I do or what I remember. I am fundamentally more than that.
I am a wife, mother, and friend, soon to be grandmother. I still feel, understand, and am worth of the love and joy in those relationships. I am still an active participant in society. My brain no longer works well, but I use my ears for unconditional listening, my shoulders for crying on, and my arms for hugging others with dementia.... I am not someone dying. I am someone living with Alzheimer's. I want to do that as well as I possibly can....
Please don't look at our scarlet A's and write us off. Look us in the eye, talk directly to us. Don't panic or take it personally if we make mistakes, because we will. We will repeat ourselves, we will misplace things, and we will get lost. We will forget your name and what you said two minutes ago. We will also try our hardest to compensate for and overcome our cognitive losses...
My yesterdays are disappearing, and my tomorrows are uncertain, so what do I live for? I live for each day. I live in the moment. Some tomorrow soon, I'll forget that I stood before you and gave this speech. But just because I'll forget it some tomorrow doesn't mean that I didn't live every second of it today. I will forget today, but that doesn't mean that today didn't matter.
I'm no longer asked to lecture about language at universities and psychology conferences all over the world. But here I am before you today, giving what I hope is the most influential talk of my life. And I have Alzheimer's disease.
Thank you.
[More recently, the title of the 2024 film I'm Still Here references that its central figure, Eunice Paiva, struggled with Alzheimer's during the last years of her life. The memoir on which the film is based was written by Eunice's son as she began to experience Alzheimer's.]