Christmas 2017

A holiday greeting - the words "Happy Holidays in red with cartoon sprigs of holly, holly berries, and mistletoe arranged around the words. Keyword: ChristmasImage Description: A holiday greeting – the words “Happy Holidays in red with cartoon sprigs of holly, holly berries, and mistletoe arranged around the words.

Content Note: Christmas, “Merry Christmas”, seasonal depression, being alone during the holidays, loneliness, institutions, social isolation, roles of agency staff, Huronia Regional Centre

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It’s Christmas again, and I’ve again decided to reblog my 2014 post, “When Christmas Doesn’t Mean Family”, with apologies to those who have read it before. I like it, and there are a lot of new readers who haven’t seen it.

I’m also going preface it with the same comments I did last year…that is, for all the fuss about whether it’s more appropriate to say “Merry Christmas” or “Happy Holidays”, either well-intentioned greeting makes a fundamental assumption that for some people there’s a hope in the universe of finding joy in late December and early January, whatever festival they celebrate or don’t celebrate.

For some people, for any number of reasons, the holidays just aren’t happy times. And it’s very difficult, when you feel like you’re just holding on, to find a place in society from November onward where it feels okay to say, “I’m feeling sad/angry/frightened/lost/hopeless/lonely/confused this Christmas. Not merry. Not happy. Not jolly. I am barely holding on and trying my hardest just to get through the holidays.”

I have had a couple of Christmases where I have felt like I was just holding on. To all the people who are feeling that way — you are not alone. It’s hard to believe when it feels like you’re the only one who can’t get hold of the Christmas spirit, but there are so many more people than anyone thinks who dread this time of year.

And if you start to doubt that you can get through it, you need to reach out to the people that want to help you — even if you feel like there’s no one in your life in your life that will listen, you can always call a help line…click here to find the suicide hotlines that operate in your country.

You can get through this. Please reach out for help if you need it.

May we all experience the joy and peace of the season, this Christmas and throughout the year.

Here is “When Christmas Doesn’t Mean Family”

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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 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 is Ivy very important to me, 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 non-disabled people don’t come 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.

When “Christmas” Doesn’t Mean “Family”

White teddy bear in a Santa hat sits with a white-wrapped Christmas present in front of him, with a red ribbon and a big red bow. Snow falls in the background. Keyword: Family

Image Description: White teddy bear in a Santa hat sits with a white-wrapped Christmas present in front of him, with a red ribbon and a big red bow. Snow falls in the background.

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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.

Thoughts on Inclusion and Intellectually Disabled People

Shiny green push button with shiny grey border, "inclusion" in uppercase black letters across button. Keyword: intellectually disabled people

Image Description: Shiny green push button with shiny grey border, “inclusion” in uppercase black letters across button.

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Recently, in an internet  discussion group to which I belong, we were debating all things inclusion for intellectually disabled people.

Inclusion vs. Segregation for Intellectually Disabled People

It was an interesting experience for me, because I’ve never really heard people defend the argue the idea that moving toward community-based housing and employment and out of institutions, group homes and sheltered workshops potentially violates the ideals of person-centred planning, and that institutional residential and employment arrangements aren’t segregated…that they are, in fact, a better option for intellectually disabled people than more community-based alternatives.

I was one of the ones arguing in favour of more inclusive practices when supporting intellectually disabled people, which probably doesn’t shock anyone. Out of the three of us “inclusion types” that were talking the most, though, I was definitely the moderate one. Maybe it’s because I’ve worked with a lot of parents and seen how scared they are for their intellectually disabled childrens’ safety once they leave the home, that the constant supervision of a group home or even a more institution-like setting (Ontario doesn’t have institutions anymore, but I understand that other areas still do) becomes attractive. I can see the other side, while still firmly coming down on the idea that it’s more desirable that all disabled people , including intellectually disabled people, be as much a part as the community as possible, and that institutions, group homes, and sheltered workshops tend to work against that.

The Argument Against Community-Based Placements for Intellectually Disabled People

But, said the people arguing the other side, what if people are more comfortable in those environments and they don’t want to leave? You are taking away their choice. You are telling them, “Inclusion is the right way, and you’d better get on board, even if it means leaving your home/workplace and your friends and all the things that make you feel comfortable.” It wasn’t about segregation, they argued. It was about really listening to intellectually disabled people and what they wanted out of life.

And wow, did it ever take off from there.

We got into questions of whether people can actually make an informed choice if they haven’t experienced the alternatives, whether social systems stream intellectually disabled people into segregated settings and when that starts if people do believe that it happens (I do believe it happens, practically from the time that a child is officially identified in school as having an intellectual disability), whether disabled people having other disabled friends is “inclusive”, and medical intervention versus “warehousing” when a person does have to spend time in an institution. We talked about caregiver rights. It got heated, sometimes a little nasty. People were very passionate about their positions.

The other, less moderate gentleman and I tried to explain our positions on all this several times, but I didn’t feel like I was being understood…I’d venture a guess that the people on the other side of the debate were feeling the same way, from the tone of the discussion, but it seemed to me that we were all ultimately working toward the same goals. I was puzzled as to where we were going sideways.

What I Do Know – How I Support Intellectually Disabled People in My Work

I’m not interested in fixing a situation that isn’t broken to begin with, including moving someone out of an institution, group home, or sheltered workshop if they haven’t indicated that they’d like to move and they’d like my help to do so.  There are some situations where, unfortunately, people have to move out of places because of issues related to safety and violations of rights, like when people were moved into community settings when institutions started to close in Ontario, or when medical issues arise that require specialized interventions that can only be delivered in a hospital or, say, inpatient mental health services setting, or when families are in crisis to the point where they can’t care for an intellectually disabled family member anymore and that individual must by necessity take the first placement that opens and wait there for a more suitable one.  These are tough situations, involving the health and well-being of the individual, and sometimes that has to take priority over whether a placement is community-based.

However, how can a person truly answer, “Do you want to continue living in a group home or live (or work toward living) in your own place?” or “Do you want to stay at the workshop or try to get a job somewhere else?” if they’ve never experienced anything but living in a group home or working in a sheltered workshop (or at least never had it explained to them that there are different ways that people live and work than what they’ve experienced and that they have to right, as citizens, to try these things if they want?) Maybe it doesn’t happen tomorrow, because maybe there are skills that need development and supports that need to be put in place…maybe it takes a long time to work up to being ready to live independently…and maybe it even doesn’t work the first time out because it’s too overwhelming…

But intellectually disabled people should have the right to take risks, and it’s not the worst thing in the world for them to experience disappointment. And you never know – what you think is going to turn out terribly (and I’ve been there in my work, when an intellectually disabled person that I support has announced intentions to do something and I’ve just wilted inside, thinking, “Wow, there’s no way this is going to work”) may actually turn out wonderfully for all involved. I’ve seen this happen too.

One interesting thing I noticed about this discussion was that sometimes it felt like each side was criticizing the other for the same thing:

  • There are too many rules and the individual doesn’t get to make them
  • People fall through the cracks and that leads to bad service and potential abuse

I took two classes on person-centred planning for my Developmental Services Worker Diploma, and have been exposed to it as a philosophy of support for as long as I’ve been in this field (over half my life). I’ve never taken it to mean that it’s about making choices for people, or even influencing them a certain way. Yes, it’s unfortunate that intellectually disabled people (all disabled people) are at the mercy of whatever current trends are shaping the services that they use, and if that means that means that a person has to leave a group home or sheltered workshop (or move into a group home or institution setting if you’re living in England, or even in Canada – loss of control is a theme for disabled people the world over, it just manifests in different ways sometimes), but when I worked with youth I told them:

“We’ll talk about what your options are, we’ll make a plan, and then we’ll talk to the people who can put the plan in place. If you ever want to change the plan, just say so, and we will. This is your life.”

Part of the process was, “If you don’t like doing something that we’ve set up, tell me, and it doesn’t go any further. It stops there.”

The individual always set the course. Why wouldn’t they? It was their life, not mine.

When families are involved, that kind of process is difficult.  It takes a bit of negotiation sometimes, particularly if the person was under 18 and not considered an adult. In the group discussion, I didn’t get into how my first responsibility was to the individual, not the family (with some exceptions dictated by legalities around age). It didn’t seem like a discussion that would be welcome among parents in the group.

I don’t use a specific person-centred planning tool, but I use the methodology, and didn’t understand the objections to it in the discussion.

And if you want to argue that people don’t fall through the cracks and that abuse doesn’t happen in residential settings, then I’ve got a long list of articles that you need to read.

I left the conversation when it was obvious that it was getting personal and not going much further, but not before I posted this:

I don’t know whether it was this thread or another that I wrote about Special Olympics, but I’ll say again that my experience of it is that intellectually disabled people get told, “This is a great chance for you to play sports” when some of them could definitely play sports on a level that would allow them to comfortably compete on a community league…certainly much better than I ever did before I acquired disabilities. I understand the reasons why people like SO, and it’s certainly a valuable program, and even if people can play in community leagues and would rather stick with SO for their own reasons…go for it. But people have the right to know all their options, if they’re interested in playing sports…that they have the right, as all community members do, to try community league play if they want, instead of having people assume that because they’re disabled, they “belong” in SO and that it’s the option they’d choose, so no others need to be talked about… but as far as whether people choose to associate with other disabled people, or non-disabled people, or a mixture of both, or hang out by themselves…not my call to judge their choices or to presume to tell them their choices are wrong. I just let them know what their options are and, if they want/need the help, assist them to set it all up (assuming I ever get work in this field again). Does that make sense?”

 

I think that there will always be some intellectually disabled people who require a level of care that’s more institutional in nature than inclusion advocates like me would like, because of specialized needs. I also think that there are ways of increasing agency and self-determination within these settings for providers who are really committed to doing so, and that the population who really requires this level of care is smaller than we assume. The thing that really bothered me about the arguments against community based-supports was that they seemed to minimize the fact that intellectually disabled people have rights – not rights that can be ignored or tweaked because of the individual’s disabilities to fit others’ needs, but rights that they have by virtue of being adults in our society.

We need to get back to presuming competence and finding ways to allowing intellectually disabled people to make truly informed life choices, not letting ourselves be afraid of individuals potentially making bad decisions.  We need to be okay with the lives of people we support getting a little (or even a lot) messy as they learn about being a community member and the rights and responsibilities that come along with that.

Ultimately Agreeing, But Still So Different

The thing that we all agreed on this discussion? That disabled people in general and intellectually disabled people in particular should drive the discussion in which services develop and change, and that they should have as much input as possible into that change process. I feel like we all had a lot more in common than anyone would guess at first guess. Just drastically different ideas of what that should look like, which was perhaps the most frustrating thing of all about the whole discussion.

Thoughts?