I'm at the 'EX' (Canada's National Exhibition) watching Ruby and Sadie as they go through a 'fun house' over and over and over again. They love it. It's fun to relax into my day off and watch the kids simply have fun. While waiting in the shade for them to go through it yet another time, I see a young staff, she's maybe 40, with a man of similar age with an intellectual disability. He has an unsteady gait and he really wants to go through the fun house. She walks him to the exit so he can see that on the way out people have to go through a moving, circular, exit. He tells her that he thinks he can do it and wants to try.
She doesn't try to talk him out of it, and they make their way to the entrance. They wait behind a group of teens and and elderly couple for their turn. Then in they go. I can see their progress because I've become familiar with the outer parts of the pathway having seen the girls do it several times. Along the top balcony there were rollers that the kids loved part scooting, part rolling across. When the disabled fellow got there he looked to his staff, she gave him encouragement and laughing they both made it across. You could see his pride, fully evident as it gripped his shoulders.
At the exit, where we were waiting, we saw her come out first. We'd already seen the attendant stop the rolling circle at the exit a couple of times for people who felt they couldn't do it. She coached him to come forward or to let the attendant know he wanted it stopped. Her face lit up when he launched forward and laughing as he almost fell, like everyone else did, before stepping on firm ground.
There was a young couple standing next to us, also watching, they, like us were waiting for kids to come through. But unlike us, they didn't see her work. The man said to his wife, "Must be nice to get paid to just play around, go to fairs and movies," she nodded. Like me they were having a day off, but they couldn't see that the staff was working a holiday, providing quality service, making a difference in the world.
They saw the place she was at but not the work she were doing. The same is true for almost every direct support professional. People see you working in someone's home and don't realize that you are WORKING in someone's home. People see you supporting someone shopping and don't realize that you are SUPPORTING not SHOPPING. People get confused by where you are so they can't see what you are doing.
Many people simply don't understand what direct support professionals do or why they do it, but what's even worse is that lots of those people don't understand your work as work and your job as a profession. The staff I saw yesterday was a skilled professional. She was skilled at giving exactly the right support. She knew that supporting someone was offering a whole series of choices, he didn't need direction, he needed someone to allow space and time, to provide information and options, and then allow him the dignity of making his own choice that effected his world and his time spent living his life.
We have miles to go in educating the public in regards to the value of people with intellectual disabilities, but I would suggest we have even further to go in educating people, educating systems and educating governments about the value of the work done by direct support professionals. Maybe the most important thing that matters, right now, is that the people we support, like the man at the 'EX' see our work, see our support, and benefit from our skill.
That staff that I saw, she looked as if she simply loved what she did. Loved supporting this guy to do what he wanted to do. And that's great. It's even a reward in and of itself. But we must remember, a labour of love is still work. It still requires skill and effort, it still requires that we leave our homes and families on a holiday weekend to support someone else. No matter what, it's work.
Important work.
Valuable work.
And unlike what the couple beside me implied, it's work that requires skill.
A lot of skill.
Direct support professionals are skilled professionals providing a valuable service so that people can live valued lives, freely, in their community.
It's a big deal.
As the staff was walking away with him I saw him turn to her and say, "Thanks."
He gets it. One day others will too.
8 comments:
Beautifully written, Dave. I am at the beginning of my journey as a DSW student attending Loyalist College. When I come home and share some of my experiences with my husband and kids, they tend to see the outward image of my experience much like the couple does and don't realize what has gone into the "behind the scenes" to prepare us to be able to give quality support. The support given is calculated and thought out to ensure we "do no harm". As I had completed my first Co-op placement at L'Arche (locally) one of my most enjoyed activities was baking with two core members. My kids hear "baking, that is fun and does not seem like work!" The part that is not seen/realized is with each step, I am walking through in my mind how I can help and further aid/teach skills to aid each of the members, being mindful of their skill sets, and especially not doing for them what they can do for themselves, yet presenting opportunities for them to try new things. I am still learning, but love following your blog and reading your books which are assigned reading in many of my classes, and they give me valuable insight into areas I would not have given thought to otherwise. Thank you!
Right on! Sharing this...
I can't tell you how important it is to not only recognize our DSPs for the work that they do. But we also have to recognize that they have families and lives too, and need to put food on their tables and a roof over their heads just like the rest of us. Without the accompanying wages that reflect the professional skills and dedication they show each day, we lose them to jobs that pay more and have far less stress, even though it breaks their hearts to leave a profession and people they love. Yet our state budgets refuse to add the $s needed to raise the pay level from minimum wage, at poverty level, to a wage that not only reflects their value, but allows them to stay in the profession that has more meaning for them than mere monetary rewards. The reality is that many of them simply cannot afford to stay in a profession that keeps them at poverty level. In NY State, the DSPs that serve in non-profit agencies providing services and supports for people with intellectual and developmental disabilities (IDD)have not received a cost of living raise in 8 years...EIGHT YEARS! Our agencies who receive 90% of their funding from Medicaid use 80% of those funds to pay their DSPs. Our DSP workforce is dwindling because these agencies cannot recruit and retain people who need more than a poverty level wage. Now is the time for families, self-advocates, and agencies to pick up the pace in their advocacy campaigns...right now NY has a statewide campaign, Be Fair to Direct Care, that is calling to arms all stake holders to write letters to the editor and cc our Governor, visit their legislators, hold press events, and rally around the state to focus on this crisis in care of their most vulnerable citizens. Now is the time for every single state in the Union to follow suit...we cannot as a nation of conscience allow these individuals fall through the cracks of a society on whose governmental leaders fall the responsibility of changing the course of this perfect storm!
Amen, Dave. Most people simply don't understand people who do nontraditional types of jobs or provide the kind of excellent support to people with disabilities that this staff person did. They have no concept of how much goes into it. Heck, just working at home (as I have for many years now) has caused me *endless* annoyances over the years. People just don't grasp that what I do is *work* and I can't just abandon my job to go gallivanting when I want to.
One of the few people I've met in recent years who totally gets what I do is a friend of ours who happens to be totally blind. He understands the whole idea of stepping outside the traditional job market. He's demonstrated the clearest grasp of having an actual job at home of just about anybody I've met in the last 20 years. But he's an example of a person with a disability following a nontraditional path anyway -- attorney, owner of several businesses employing lots of folks with disabilities as well as non-disabled folks. All he asks is that people can do the job and do it well. More employers need to have his attitude.
I have to also add it was nice to see such a positive example of a person with a disability out in public, after your recent stories of rude, stupid, or thoughtless people. I realize the latter are in the majority, but we need to hear about the former, too, to know that things really are getting better.
How wonderful that he has support that lets him truly participate in the world--this should be the standard, not the exception.
It's not just personal support staff, though. I remember walking down a corridor in my office building with a friend; two other company staff members who I did not know walked by as we passed the woman from the housekeeping/maintenance company who was at that moment watering some plants and trimming brown fronds. One of the other people said, off-handedly, "Oh, it must be so relaxing to work with plants."
My friend and I were aghast. Because, yes, it probably was relaxing. At least, it was probably more relaxing than the part of that woman's job that involved cleaning the toilets. All of her work gave us a nice office environment. Yet rather than recognize that here was a person whose labor made the building a more pleasant place to work--and that much of the labor needed to achieve that was quite UNpleasant--the passer-by only came up with a statement that was condescending.
Neither one of us said anything at the time, because we didn't know who those other people were (or what their position in the hierarchy was, but based on their clothing and unfamiliarity they probably vastly outranked us in a variety of ways). And we didn't want to put the woman working on the plants in an awkward position. But we did continue to have conversations with her when we encountered her. She was a really nice person who made our workspace better. I can't be condescending about or dismissive of that.
Well said and spot-on!
What if she were working as a nanny or babysitter to a child? Would they have thought she was getting a vacation just because she was somewhere fun? Or would they have recognized that she was there to support someone else and she was doing her job?
This is a very important post, and because of that it's taken me a long time before I've felt comfortable responding to one part of it. One tiny part of it. That I think is mistaken. Honestly mistaken, but mistaken in a way that hurts.
I've been part of the DD system since adulthood. I've been part of mixed psych/DD systems since adolescence. By part of the system, I mean I'm a client. I'm one of the people who receives help. And while I don't technically have an intellectual disability (by modern standards -- although there's an argument that could be made even under those, it's really unimportant to what I'm about to say here) I know you were talking about all DD people when you mentioned people with ID, and especially those of us who are assumed to have an ID whenever we go out in public. People like me.
And I know -- I know this in my bones, I know it in the dangers I face every single day of my life, the cliffs that I can fall off just for being me, when if there are cliffs for staff... they can stop being staff, if they want to badly enough. I can't stop having developmental disabilities. I can't stop being treated as a person with an intellectual disability. That itself is power I don't have, that staff do have, the power to walk away.
But the thing I mean to say is... I know it in my bones that I am valued less than the average dog to a lot of people, and that however low staff are valued, they are not valued that low. They don't have to worry every time they're hospitalized, that they won't be of value enough for their life to be worth saving -- or if they do, it's for reasons other than being staff. And same goes for a long list of other things I could imagine.
So while I totally and completely agree that the value of what staff do is not reognized widely enough, and needs to be recognized more. I also know that their value as human beings, and the value of their work, is and has for a long time been valued far more than the value of my worth as a human being, merely for existing in a body that works like mine.
And that's important enough to say something about. It was important enough for a mutual friend, also DD, to point out this post to me wondering how on earth to respond. So i'm responding. Understand I mean no disrespect to you, or to staff, who do an exhausting, thankless job every single day, that requires high levels of skill and almost no pay at all. And understand I don't like to make comparisons who has it worse. But you made a comparison, and I think it's important for someone to say on the record that you might have gotten that comparison a little bit wrong, whatever your intent was there.
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