Often birthdays are a quiet affair at our house, which is just fine with me, but this October marked my 50th and we ushered it in with a wildly fun Elton John themed party.
Seriously, for people who are pretty much homebodies, we threw quite the celebratory shindig. My amazing friend G♥ created one her fabulous dance playlists of 50 songs, which had us on the go till all hours. We finished the list at 4:30 in the morning… and yes… my leg muscles were hating me for the next few days, but it was entirely worth it.
A few weeks later, we are still finding bits of glitter, stray feathers from the flashy abundance of boas, and the odd pair of party shades stashed in spots we are shocked we hadn’t noticed.
So ya… 50…
I figure this perhaps marks the half-way point of my life (which may be revealing of my cocky attitude)… but really, in many ways – I feel like I am just getting started.
There is a part of me that feels like I should be looking back – taking account – and settling in to something more… I don’t know… settled???
But I find myself instead looking forward… and wondering about new possibilities and feeling really excited…
I don’t know where I am going exactly – and I don’t need to – I just have a kind of general feeling and trust that whatever it is that unfolds and that I make happen (I have no doubt that these are combined: luck, unfolding motions of the universe, mixed with my choices and actions) will be well situated in and honouring of the things I value.
I feel stronger and more sure of myself than I did when I was younger, more trusting of my busy, messy brain, and my learning style and my ability to separate out the entwined threads of my thinking and then communicate these with others.
My understandings are deeper, I can shift in and out of the meta and the minutia, and I am more productively sensitive and aware of that space between myself and others. I am fascinated by that space between – and the connections with others – that place where we interface and where a word, or a look, or perceived tone can shift and change things and open up possibilities.
And too, as my world has expanded with my wonderful connections within disabilities communities, and as I have developed close friendships with Autistic people, I have become more aware of what I am seeing as my responsibility as a person with privilege. I am committed to continue to work with other activists to affect change and to move the world (or at least one small part of it where I might have some tiny dominion) in a positive direction.
When I consider how I feel about my future – I cannot help but also reflect on H and that I am increasingly comfortable with understanding that I do not have the ability to see his future.
Of course I project about the ways his future might be shaped by actions and decisions (his, mine and Craig’s, and other circumstances), but I also feel that I am welcoming his transition to adulthood with an increasing trust in how things will unfold, and in his capacity to learn, and to make self-determining decisions.
During a presentation last week, I was asked about what I see for H’s future. I responded that I don’t really know, that I have learned that I cannot know, and that my role is to support him in authentically being himself, to find his way, his path, to be fulfilled, and to ensure there are opportunities for him.
The truth is… I can’t know H’s future any more than I can know my non Autistic daughter’s future, or my own, or any more than anyone truly can know the future of another. I made the point that what I am learning is that it is really important for me to be okay with not knowing how everything is going to unfold, and though it may not be easy, I trust this process.
Periodically, I am also asked by someone, a friend or colleague, about what I imagine for H in the future, including whether I think he will ever live independently…
This question about independence happened recently, and for a second I felt a bit put off or defensive about this query, but that’s when I took a breath and settled deeper into my thinking… to let that moment pass.
My response, after the breathing beat, was something like this: “Independence… ya… I am not sure I know what that even means. It is a good question to consider – but really – I am wondering if any of us actually live independently… because… I know I don’t.”
I just love this particular friend, and the way we went on to discuss ideas around independence as well as the role of a parent supporting this process of transitioning to adulthood.
And too… this had me thinking further and considering that this drive for independence is perhaps situated as an unachievable standard that we hold up as some kind of measure of success for people with disabilities, but that we don’t do this to non-disabled people.
We don’t do this… because it isn’t real…
I mean that independence… it isn’t a thing… it isn’t a destination in itself.
Consider for a moment that we don’t generally ask someone with a son or daughter who is 24 and still living at home, with that kindly gentle tone laced perhaps with subtle underlying pity, “Do you think ____ will ever live independently…?”
So ya, for H, the word independence does not capture some destination as he makes his way to adulthood. The goal is that he has the resources and capacity to be emotionally healthy, self-determining, able to problem solve, connected to community, and interdependent with others whom he cares about and who care about him, and hopefully that he can spend time doing things that he is passionate about, and that give him a good quality of life and a feeling of fulfillment.
So – now – when I think upon myself – and how long it has taken me to get to this place, and how I am still learning and growing and even now contemplating things that years ago may have seemed entirely beyond the realm of possibility…
I will gift my son the same time and faith that I gift myself…
I will believe in my son as I believe in myself…
I will trust in the unfolding of possibilities…
Related Post: https://30daysofautism.wordpress.com/2013/08/16/problem-solver-and-redefining-independence/
30 Days of Autism is a project designed to fight stigma, promote civil rights, and increase understanding and acceptance for those who process and experience the world differently.
©Leah Kelley, Thirty Days of Autism (2014)
Hi Leah – I am so glad to read this. I have been saying for a while here, to anyone who will listen to me, that we need to stop privileging the concept of ‘independence’ and making it so much the grail. As if ‘independence’ ever made anyone a better human being or member of the community! What is so wrong with dependence, or interdependence? Of course I’m speaking as someone who has a stake in this as the mother of a young man with ‘high need’ . I am so fed up of professionals talking about ‘independent living’ and thereby setting up yet another inappropriate standard for Dylan. As soon as I can get around to it I am planning to write a post on this and a couple of other education/care concepts used here in the UK that are bugging me. Thank you for yours 🙂
Thank you, Liz ❤
I appreciate the way you phrased "we need to stop privileging the concept of ‘independence’ and making it so much the grail." That captures it so beautifully!
I am very much looking forward to reading your posts.
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Firstly, Happy Birthday! My husband turned 50 on Friday but I’m not sure he did as much soul searching as you appear to have done – in fact, I know he didn’t!!
I have also been asked about the ‘independence’ thing for my daughter and it does cause me to worry. However, it is true that I have lots of friends back in the U.K. who still have their offspring living with them into their twenties and thirties mostly due to the high cost of housing. Maybe we should embrace the way that many other cultures live with different generations of the same family living together in the same house or community. I’d have to check first with my husband before moving my mother in though! 😉
Thank you, tialys ❤ Happy Birthday to your husband as well!
I love the idea of embracing the way families are systems of supports in other cultures – and also – I suspect in more so in times of old. I've been considering that this should maybe be called co-living… as a possible reframe… because language has such power to shape our thoughts and responses.
Wonderful post Leah. Thoughtful, insightful, & thought provoking!
This: “Consider for a moment that we don’t generally ask someone with a son or daughter who is 24 and still living at home, with that kindly gentle tone laced perhaps with subtle underlying pity, “Do you think ____ will ever live independently…?””
Is a brilliant look at how people ‘think of’ other people’s lives & situations without seeing parallels in their own. Got a ‘Bill & Ted’ whoaaaaa out of me.
(((WiseUp))) Thank you!
This is a most excellent comment!! ❤
“… independence is perhaps situated as an unachievable standard that we hold up as some kind of measure of success for people with disabilities, but that we don’t do this to non-disabled people.”
Yes! Thank You!! Ask me if I teared up when I read that…
I LOVE YOU ❤
❤ Thank you!!
All the love right back to you!!
The notion that autistics can not live independently originated some time after 1990. Before that, almost all autistics lived independently, and it was no problem. No one would ever have thought that they couldn’t. Autistics were considered normal back then. Human cultures have changed, not autistics.