Gentle Readers, I am taking the day off from blogging today because I want to share this letter with you, the writer did not want to be identified other that as a 'loyal reader' and I appreciate her need for privacy and am thankful that she gave me permission to go ahead and print it. I love getting mail like this (versus the not so nice kind where some people tell me what I should write - if I truly cared - and what I should think - if I truly cared). Anyways, here's the letter, thanks Loyal Reader (LR) for the day off and for sharing your insight.
Dear Dave,
I work in the disabilities field. Because I only have just over five years experience in this field in a professional capacity, I feel a bit awkward about sharing my experience, almost as though I would be preaching to the choir. The lesson I learned this week is probably one that many other very worthy disability workers have learned before me. But, I am so excited at having learned this lesson that I just feel the need to share it.
In our service, as in any service for the disabled, there are many people with varying, complex needs. The woman I am writing about is perhaps one of the most challenging due to her complexities. Sometimes passive, sometimes aggressive, and often passive/aggressive, she is also sometimes verbal and articulate, sometimes non-verbal, and often only moderately verbal speaking only short, pat phrases as she determines. Nobody can make her switch from one mode to the other. It is all solely within her own control, based on a system that only she understands most of the time.
That is when her life and health are stable. But, recently, she has come upon a period of extreme instability. Her meds stopped working, so they were changed. The med change was a huge upheaval for her, bringing about all sorts of odd behaviours that after much investigation were found to be from the side effects. A residential change was also part of the equation, making this a most trying and difficult time for her.
So, one day this week when she passed by me in rather close quarters, and her right hand flew up to her face and back down again, all in a very jerky motion, I was concerned. I determined that I would observe a little more to see if this was some sort of a tic, or maybe a small seizure. It could be that it was only a one time event that would never be explained.
But, another worker came up to me a little while later, and asked me if I had noticed this behaviour in the woman over the past couple of days. I told her I had seen it once, while she told me she had seen it several times over two days. We decided that it was imperative to take this issue to management right away, in case she was having even more ill effects from her meds. So, my co-worker did just that.
Yesterday, it was explained to me why this woman was making these jerky movements. She was practicing her Wii technique! Sweet relief is what I felt at hearing this, and I enjoyed a good chuckle at the situation.
Then I got to thinking. Do we get so immersed in our work, take our roles so seriously, that we miss out on some very important elements of the personalities of those we serve? Are we so busy advocating and serving and making sure to 'be there' for our clients that we begin to only see disability around us? When a behaviour occurs, are we guilty of pinning that behaviour on the person's disability and looking for a cause for it? And if so, does that make us so very different from the people we try to inform? If we see 'disability' too much in our daily work, how can we preach to the general public to look beyond the disability?
That was my take home lesson for this week. Sometimes, it's just about who the person is.
LR
15 comments:
Very interesting (not that I know what a Wii is.....)
A Wii is a computer game format wherein you use a wand to indicate your movements, it's highly interactive.
Dave,
Even though I enjoyed the letter you posted today, I come to Chewing the Fat to read your writing. I am always disappointed when you put someone else on your blog. As far as I am concerned doing this is just lazy. If you want to put someone else on the blog fine, go ahead. You still owe us, your regular readers, a blog that day too so why not two posts on those days?
LR2
I don't think you are preaching to the converted. Your insight is beyond your few years in the field. Having nearly 30 years, I found part of me still wondering whether it was something else - disability based and the other half thinking wow wonder what she is playing on the Wii and wonder if someone gave it to her again for her disability. In thinking this I realized disability was meshed in with all my thoughts and I wasn't just looking at someone who like thousands of others have discovered this new form of entertainment, to play just for the sake of play - but rather to play to deal with her disability. Perhaps us older converted folks need to learn new lessons too! thanks for sharing.
To LR: Thanks for this letter! It's not just a disability issue. As a vegan who avoids animal products, I sometimes have people ask me what's "wrong" with onions (nothing at all, I just don't like onions, not all my food choices are related to veganism!) I think sometimes people kind of mentally magnify whatever is "different" about another person to the point where they forget that it really is just one aspect of who they are. And if your job is specifically to focus on that "difference" and "treat" it etc., I can see where that tendency could become magnified.
Re, her being able to talk some of the time but not others: you might find it helpful to read this blog post written by a woman with language processing issues that sound similar (at least in outward appearance): http://aspergersquare8.blogspot.com/2007/11/lets-have-conversation.html
The comments left by other readers at that page will also be very interesting to read because many of her readers have similar linguistic processing issues and face the same frustrations. For example, sometimes other people try to pressure them to speak--which only makes things worse if they're already having trouble with speaking. (I gather that even gentle coaxing can be a very disruptive interruption if you're right in the middle of intensive processing, in the same way that it wouldn't help you become any better at math if someone were to interrupt you right in the middle of solving a really complex calculus problem. Sometimes what's needed is just MORE TIME. And interrupting their processing to say, "Take the time you need," entirely defeats that purpose!)
Or sometimes what they need are alternate means of communication, such as typing etc., that they can use as needed. Some people do use communication aids on only a part-time basis, precisely because linguistic processing and speakng is a skill that may come and go at unpredictable patterns for them. Joel at thiswayoflife.org/blog is one example. And I've "met" others on line who either follow a similar approach, or would really LIKE to do the same thing but have been afraid to try because they're afraid how other people will react (ie, they think others will accuse them of making up the problem because most of the time they CAN speak. But what they don't see is that sometimes it becomes a huge struggle, and they may resort to echolaic talking that doesn't communicate what they're actually thinking--it's just a rote script they've memorized and use to get other people off their back when they can't really process language well.)
I feel the need to respond to anonymous number 2 who feels s/he is "owed" a blog a day. In fact, you (and we) are owed nothing! Dave posts daily. That's his choice. He could choose just as easily to post on alternate days, weekly or never! Dave writes for free...we read for free. If you don't like what's on tap one day, come back tomorrow, I say! Can you say "sense of entitlement?"
To LR2: Please let's remember that Dave is doing this blog entirely in his own time. No one (including you) hired him to do it, he just decided to do it on his own initiative. Although I think he does receive some personal rewards from the process, it's still pretty generous of him to spend so many hours sharing his thoughts and insights with us at all.
If some neighbor suddenly decided to start doing all your household chores for you, not because you needed them done or couldn't do them on your own but just to be incredibly nice ... and then that neighbor decided to take a day off and leave you to your own chores that day, would you scold them for it? Or would you thank them nicely for having done so much for you all along?
I maintain a blog myself, so I know first hand that it can take a lot of work. I find it amazing that Dave can manage to generate a new blog post nearly every single day, even with all the other things I know he has going on in his life! I think he deserves the occasional day off and don't begrudge it a bit if he does that!
Dave, You owe us nothing--the fact that you usually write EVERY day is a huge gift to your readers and I thknk you. I also appreciate your sharing insights from others when they arrive. Enjoy days off when they arrive and may your rest nourish your soul!
It really is good to remind ourselves that everything is not a diagnosis, or side effect, or a 'behavior.' It is easy to get immersed and forget.
Another essay by a woman who, at the time she wrote it, was still alternating between part-time speech and part time use of speaking aids. (In her case, she now uses speech aids full time.):
http://www.autistics.org/library/spchasst.html
LR2, Dave is a much more regular blogger than any of us and I like what he shared today. Everyone's going to need a break sometime.
I invite you to come read any other number of disability blogs too if you haven't had a chance--you can go to the Temple University Disability Studies for a long list. When people are quiet and I'm longing for more to read sometimes, I go investigate some more blogs.
Andrea Shettle, MSW
You often have so much to say in response to another reader who is in hopes of getting a reply from DAVE. Do you have your own blog?? You have great ideas and opinions. Perhaps readers would appreciate these responses more if they went to YOUR own blog.
I am a student just venturing into this field, and your story was a lovely reminder that we are treating people, not conditions. I think it's fantastic that, considering the woman's history, you noted that something unusual was happening and wanted to find out more. It was the responsible thing to do! And in doing so you found out more about her as a person, which makes it even more lovely. :) Great post!
To I Just Want To Read Dave' Blog: I feel I must respond to your attack, or what I believe to be an attack, of Andrea's comments here on my blog. I appreciate what Andrea has to say and enjoy her comments, that she takes the time to respond thoughtfully to what I write is a compliment. Early on I decided that I would not respond to individual comments unless truly called to ... mostly because I have a daily blog and doing both a blog and responding to comments is impossible with my time constraints. I explained this decision early on in the life of this blog and perhaps need to state that again. I do not ask that the comments always agree with me, we have had some lively debates, but I ask that they be civil. I'm not sure, because the written word differs so much from the spoken word, of the tone of your remarks - but if it was to dissuade Andrea, or anyone, from commenting freely I wholeheartedly disagree.
As we are on the subject, I aim to publish a daily blog and sometimes include writing from others - usually in the form of letters that I recieve from others. I do not believe that I 'owe' anyone anything other than my honest attempt to document my life, my work and my passions. Should I ever come to feel that I MUST write something - the blog will become a chore and I avoid chores. I am pleased to have loyal readers and I try to be a loyal writer, but to LR2 let me ask you ... if I owe you a blog, what do you owe me ... ?
This letter reminds me very much of my first months as a mom. After learning our daughter had Down syndrome, my husband and I were anxious to figure out whether the things she was doing were the DS, or the baby.
After a few months we stopped looking so hard, and after a few more we came to accept that they are one and the same, and the distinction is not only impossible by meaningless. I imagine the learning process is a lot faster for parents than for even the most self-aware staff person, but I appreciate hearing it from your side.
Thank you, Dave.
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