Being a self-advocate is not easy. When we have one specific problem, it is reasonably manageable to report on the problem and be involved in finding a solution. But as we discovered last week, in Parshat Pinchas, successful self-advocacy depends on the ability to understand the complaint process and the sort of arguments that may lead to success. The daughters of Zelophehad prepared their case together and with care. Moses accepted their appeal and agreed that theirs was a problem in need of rectification. But it took until this week, in Parshat Matot-Massei, for the daughters’ claim to be actualized and for justice to be delivered.
For many people with disabilities and their carers, the problems confronted are not one-dimensional. Not all people have the advantage of Zelophehad’s daughters – a team with whom to strategize. Fighting for daily dignity and respect is exhausting, even with the support of a strong and supportive family. Speaking up for oneself is commendable. But what if self-advocacy is not working? Being overwhelmed by life is not a matter for shame. It can be that being overwhelmed may actually become constructive. And it is at this point that I find the wisdom of Leonard Cohen to be helpful. His song, The Sisters of Mercy, has nothing to do with inclusion or disability per se. Yet in that song I find some glimmer of hope for people with disabilities, as well as for carers.
Before I turn to the song, I should perhaps explain that through Project Zug & Limmud I have been very engaged in seeking spiritual nurturing through Leonard Cohen’s poetry & music. At Limmud and elsewhere I have been giving talks exploring Jewish themes through a close reading of the song Hallelujah, arguing that Cohen allows us all to share his spiritual journey that ends with You Want It Darker. This has become an additional arrow to my quiver, which mainly revolves around disability inclusion, the rights of children, women and other minority groups & issues relating to LGBTI rights.
Leonard Cohen’s world is very broken, but there is a glimmer of optimism because there are cracks where the light gets in. People are broken. Relationships are broken. The world is broken. No reality check needed here. Instead Cohen asks about how we can survive, given the world which we confront.
In The Sisters of Mercy, Cohen recognises a significant problem. There are times we feel so low that we don’t think we can go on. This happens sometime in most people’s lifetime. But this level of despair also afflicts those caring for people with disabilities. Carers often devote almost every minute of their day to supporting the person they care for. There are times when a carer may feel that it is too hard to continue the fight for basic survival, and they have no more personal resources to draw on. Especially when so often the biggest struggle is with those involved who are ostensibly working to improve the position of the person with a disability.
But Cohen tells us that all is not lost. Once upon a time, there was, perhaps, an Order of Nuns, called the Sisters of Mercy, who would dispense comfort to those at their lowest point. Today, such an order may or may not exist. And you may or may not be Catholic. Nonetheless, there are still those who play the part of Sisters of Mercy to us all. They may be holy, or they may be profane. They may be from a formal religious background, they may be prostitutes, or they could be random people who offer their help.
Cohen shares his own faith that there are modern Sisters of Mercy, because “they were waiting” for him. They were able to bring him comfort and bring him “this song”. Most importantly, they nurtured his soul. They swaddled him with a love that bound him and grounded him. This may have been in a moment, a night or more. That kindness on the part of a stranger, gave Cohen the boost he needed and restored his soul.
Cohen understands what it’s like. We know that his personal journey included bouts of depression. In order to allow healing, Cohen teaches, we must be prepared to accept that there are many things we cannot control. These range from the mundane – the people around you and your family – but eventual come to the essence of your very being. Cohen understands that at the dark moments of our lives, that we ultimately believe it is our own faults that we cannot solve the problems we confront. Others around us seem to swim, just as we find ourselves sinking. For some, the self talk will be that they are the cause of the problem because they have “sinned” – and if we are responsible for the difficulties we confront, we must also be also responsible for fixing them. And it’s hard.
Then someone steps in – if you are lucky – as happened to Leonard Cohen. And, with the generosity which characterises the man, Cohen prays that we, too, may find someone who can sweeten our nights. He hopes we “who’ve been travelling so long” can be re-energised. Whether the succour we need is spiritual or physical, the support is out there. If we are lucky, we will find someone and be drawn back from the abyss.
For me, music such as Leonard Cohen’s helps. But, while it may be Cohen’s duty and salvation to write songs and perform, that is not something I do. I write academic and legal papers, even draft laws about the rights of people with disabilities. I’m a disability law expert and I advocate for an inclusive community. But, for all that, I can’t get appropriate services for my daughter. More than once I’ve been in that dark place.
Just recently I wrote to every person and organisation that might possibly help that I could on the internet, asking for help. And I was told that we didn’t fit the criteria for service. My daughter is too articulate, too disabled, too able, too complex, too opinionated. Or there is a 6 month waiting period that begins from the time they receive answers to their unique 100 question form.
Then I chanced upon a disability advocate. I can’t really say that this amazing woman was “waiting for me”. I’m sure she has a million other things on her agenda. But I can honestly say that I’d got to the point of no return. Being a carer had become a full time job, made more difficult by the disability workers and therapists who are meant to take pressure off, but actually add to my workload.
After years of self-advocacy, I realised I needed someone to advocate for me and for my daughter. Unlike the daughters of Zelophehad, my rights claims (or meeting my daughter’s needs) could not be the subject of one petition. Just as her needs are too complex, the injustices she confronts are from actions of multiple organisations and on multiple levels.
My new disability advocate understands institutions, processes, and people. Most importantly, she is proactive and much more confrontational than I am. She doesn’t nurture my soul but is providing space for me to reclaim it. She is my Sister of Mercy.
I appreciate that, like me, you may have been on this journey for a long time, or you may be just embarking on it. But this is no zero sum game. The fact that I found support for now does not diminish your chance of finding support. “You won’t make me jealous if I hear that they sweetened your night.” On the contrary, I hope you run into someone who can nurture you so that you can go on. For you it may be a lover or a prostitute or a religious figure. How you can get that support you need, or who provides it, is fine by Leonard and fine by me. Just don’t despair, the “Sisters of Mercy, they are not departed or gone”.