Tuesday, 23 December 2014

When "Christmas" Doesn't Mean "Family"

In the grocery store yesterday, sharing Christmas greetings with an acquaintance, she said that she thought the most important part of the holiday season was spending time with family...didn't I agree?

I nodded, because it seemed expected of me, but the question irked me. I'm not sure why I've felt especially this year, knowing that I will be surrounded by my own family for Christmas, a keen awareness that there are plenty of people in society who won't. The assumption seems to be that everyone has a family to go home to for Christmas, or that people with family will be looking forward to that Christmas visit home, when that's not always the case.

When Your Family Has Forgotten You - Or Doesn't Even Know You

When intellectually disabled people in Ontario started to be moved out of institutions in the 1970s and 1980s, many of them didn't have any family that they knew about. Doctors had advised families to institutionalize these intellectually disabled men and women as young children and to forget about them. So, as adults that had been raised in institutions, these men and women found themselves without any family that they knew of (although some of them may have certainly had families, perhaps even family members that had never even been told about them) and in towns where support agencies had spots for them, with no connections at all otherwise.

I volunteered at agencies where staff used to invite the people they supported into their homes for holidays, to give them a place to go. It seemed natural to me, as staff were already providing most of the functions that a family would for these people anyway. But when I went away for school to train to work with intellectually disabled people, I was told that this was wrong, and that staff shouldn't be acting as friends. If people were going to go away for Christmas, my instructors said, they should be making friends in the community and visiting their homes - they should have non-staff friends.

I understand now what my instructors were trying to say, but at the time I was angry. "Show me the families that will do this," I said, Sometimes I still say this, when I hear people suggest that the government shouldn't be caring for disabled people, but that volunteers and churches should be doing it - "Show me the families".

"Show me the families that will do this," I said to my professors, "and tell me what's wrong with an agency person opening their home, on their own, unpaid time, to a person that they support, for the holidays,"

This was one of the first of many things on which both faculty and I refused to budge, but the trend has gone in favour of faculty's position that day - and I do understand why. A natural support is always better than a paid one.

But it does leave people alone on Christmas Day.

(If you're at all familiar with the abuse that people suffered in Ontario institutions like Huronia Regional Centre, I think that you'd suspect as I do that Christmas alone is infinitely preferable to never leaving an institution at all. But that's an assumption on my part. I've never asked anyone about this.)

And it's not really the point, anyway.

Christmas Isn't Just for People with Family

My family used to have Ivy over at Christmas (we don't now, for a variety of reasons), but Ivy is my very special friend and we didn't think anything of it. I believe that we were an exception. There's still a perception out there among people that don't have experience with intellectually disabled people that friendships with them are too difficult and too much responsibility, let alone invites home for holidays. This is slowly changing, as society in general starts to have more access to intellectually disabled students through integrated programs in school and in adulthood in workplaces and churches and community activities. After all, Ontario doesn't institutionalize intellectually disabled people anymore.

But in many ways they still walk on the edges of communities. They aren't fully integrated. Friendships with the "normals" don't come as easily.

Like any other demographic in society, some without families are fine with spending Christmas alone. But some aren't.And, of course, this isn't the only group in society with some members that may not have family with which they can spend Christmas, or who just can't, as much as they'd like to, spend Christmas with family. Essential services have to stay running, and people have to work in order to do that. Some people simply live too far away from family to get home every year. Some people have lost family members, or whole families, and are doing everything they can to hang on at Christmas.

If you're spending Christmas with family, I hope that you enjoy it, and I sincerely wish you and all your loved ones all the best in the coming new year. And if you're alone, whether it's by circumstance or choice, merry Christmas and all the best of the new year to you as well...the joy of this season isn't just for those who are surrounded by family, and I hope it finds you well.


  1. Sarah, thank you for your, as always, right on the money post. I am hyper-conscious of this every year, and we try to address the fact that Christmas isn't a giant joy for everyone in our sessions. Frankly, it's hard for many people (whether or not they are disabled), and I'm really quite tired of all the insane commercialism attached to it all anymore. If Christmas is about anything, it seems to me (technically half-Jewish and half-Muslim and non-practicing anyway) it's about compassion and remembering our connection to each other. I also hear you with regard to the whole paid/unpaid supports thing. That's a whole blogpost on its very own, isn't it? Sending you good wishes for a peaceful new year.

  2. This is perfect timing for me. I will be missing my mother and my son this holiday season. They are spending this holiday elsewhere (legitimate reasons) but my heart still hurts. I want them to be with me. And I know that we can't always be together. So it is understandable that you could be irked. And I do realize that many others are in my position--not with their loved ones. (Please know that I will have plenty of other family members who will be around and will be enjoying them immensely). I'm just being selfish. I want what I want.

    BTW, I don't totally understand the staff's position about taking someone home who may not have family in the area. (And in many ways I understand completely). But college students go home with families (when their family is too far away). It seemed like it was a truly nice gesture. I'm just someone who hates to see anyone (who doesn't want to be) be alone on Christmas.

    Merry Christmas to you Sarah. I hope you enjoy your holiday in the way that gives you joy.

  3. I go back and forth on the staff issue. I can see how agencies wouldn't want staff to feel like they're obligated, and ideally people would have non-staff friends with which they could spend holidays...but we're not at the ideal yet, are we? Like Roia said, it's a blogpost on its own.

    I'm glad that you've got lots of family around you this Christmas, but sorry that you're missing you're missing loved ones. I don't think it's a matter of being selfish, but of being human - and of living in a society where we don't feel as free to talk about these not-so-merry parts of Christmas as we should. Not because Christmas should be all loss and sadness, but because there should just be more of a recognition that it's okay if it's not *all* merry...

    Merry Christmas to you as well...thank you so much for commenting on this piece. I really like your sentiment, "I hope that you enjoy your holiday in the way that gives you joy", and I wish it for you as well. :)

  4. Roia, I'm so glad that you address this in sessions with your clients. I think that there's some stigma that prevents people that fully understand and that can express and have people understand fully where their sadness at Christmas comes from, that they don't feel comfortable doing it...and have barriers to understanding and effective communication and to run up against that stigma must be so difficult. Compassion and remembering connections - yes, this is a Christmas that I like. Thank you much for your comments. As Linda said above (I think that I'm going to steal this from her, lol) I hope that you enjoy your holidays in a way that brings you joy. :)

  5. The Holidays are a time to communicate that one cares, deeply, about the life of another. In the 16 years since my son's accident....no one even ever sent a card, never mind visited. Of course mom and dad go overboard, but that caring sustains life which is a great gift. A disabled person is a mere inconvenience and I applaud anyone who genuinely cares for a severely disabled person at the "holydays." and shows evidence of that care. They say blood is thicker than water; but blood clots, becomes infected, carries disease; water is clear and flows gently. I would take water any day...it comes from Source! My new year resolution is purge my soul of resentment...still got a few days before I have to honor my commitment. Blessing to you at this sacred time of year!

  6. Sarah,
    This is a great reminder - I know of many situations where this is true. In regards to a staff's role - that is a delicate situation. I myself think there are some things to consider: for example, is the staff meeting an emotional need for themselves? I know of staff who have included individuals in service in social outings - the outing involves staff and family - also, particularly if someone in service might have the opportunity to meet other members of the community that can serve as natural supports, then it could be a good situation. I think the concern would be if the social invite is limited or even if there might be abuse of power. One thing, though, that can be done if someone doesn't have family (which I have done on occasion) would be work at the person's residence and assist them to have meaningful holiday. Also, the individual can perhaps think of people who might be in the same situation over for dinner or go out to eat. Some communities, faith communities, etc., have a group meal where anyone and everyone can come - the organizer/s will provider a turnkey and few main items - people are asked to bring side dishes, salads or desserts. Especially if people don't have family, these gatherings can be a way to connect with others, meet new people, and enjoy the holidays in a family-like setting. Sometimes, this event is held the weekend before the holiday, other times it is right on the holiday - if this type of even does not exist in a community, it might be something for someone to start as a means to ensure that anyone (regardless of ability) who does not have family can have some time when they can gather with others. These events can be done in large groups or even done in smaller, more family-style settings.

  7. I miss the friends that drifted away after my stroke, and my friend Mark (who also had a stroke) was heartbroken at the number of friends that just disappeared after he had his. It's a difficult thing to deal with.

    Your resolution is lovely. I know that you can do it, :)

  8. Hi Radial,

    The meals that you're talking about are indeed excellent community builders - I know that there are a couple in my town each year and that some intellectually disabled people attend them. And I know that the role of staff varies in agencies, from facilitator of group activities organized by the agency to support at community events (or both, depending on agency philosophy, individual needs, and the numbers of staff available at any given time). I think that what's happening now (and what's happening in a number of spheres of support) is that we're very much still learning as we go along when it comes to support for disabled people - a support philosophy is acceptable at one point (like institutionalization), we then decide, as our understanding of rights and personhood evolves, that it's not, and supports change along with our values, and this has happened several times in a lifetime for some people in service! So staff went from being one manner of caregiver (institutions) to another (community-based...more like family members) to not being considered friends or family (the Circles program, for example, makes it very clear that staff are not friends or family). It's a lot to work out policy-wise, let alone emotion-wise, for both staff and people in service, and not entirely fair (I don't think) that we ask people in service to do it, but I see why we try...