Tuesday, March 01, 2011

Offering, Respecting ... A Huge Difference

I ended up doing some research this weekend and as a result I was on a lot of web pages regarding services to people with intellectual disabilities. Forgive me for saying this but reading these takes an awful lot of concentration. There is a disturbing 'sameness' to them that concerns me. It's like there are a set of words and a set of ideas that need to appear and, inevitably, they do. Inclusion. Integration. Respect. All wonderful words, and they appear with a regularity and predictability that reminds me of that terrific bit of advice, 'this job requires sincerity and once you can fake that, you've got it made.' Perhaps, I'm being too critical. Perhaps.

However, one thing I noticed was a phrase that kept appearing over and over again. A collection of words that sounds good, on first reading but sounds ominous after several readings. 'We offer choices.'

Choices are a good thing.

I get it. I agree with it.

When the 'choices' bandwagon hit service provision I was, initially, pleased. I thought that it was about time that people with disabilities had choices, real meaningful choices, about how they lived their lives, about what goals they set for themselves, about the morality they would set personally. But then I discovered that the 'choice' movement wasn't about 'choices' but about 'offering choices'. Not the same thing at all. But before I begin, lets get something straight. We've always offered choices. Even if it was as basic as 'eat this or eat nothing at all' or 'do this or suffer consequences' or 'my will or your pain'. Choices have always been there, dark choices, but choices. These were the choices we offered.

Offering choices and respecting choices are very different things. The mere act of 'offering' means that we get to choose the 'set' of things being presented for choosing, that we get to exclude from the bunch those things we don't want or don't approve of, that we still dominate the decision making process. Not only that but we may even have meetings with large groups of people, staff, parents, siblings, consultants, to determine which choices will be made available. Relationships, yes ... kissing, no; movies, yes ... boozing, no; celery, yes ... smoking, no. We can and often do purposely cull out those things that would either cause us to sweat because of risk, or cause us discomfort because of our own personal morality.

Respecting choices, is much more difficult. In fact, I never saw those two words together on a single website or blog about the issue of choices. No, that's not true. I saw those words together when speaking of 'parents' or 'family', when speaking of 'non controversial' issues. Never, however, in relationship to things that adults do, or things that could cause significant problems for agencies.

I get that being a service provider is difficult and that we have got to constantly be on guard about the decisions we make. I truly get that. I also get that sometimes the system doesn't have the freedom within it that we'd like it to have. I get that. I just think that we should constantly be trying to develop that freedom, to constantly be pushing ourselves and our values to the point that real choice with real risk and with real ramifications becomes part of the mix. My worry is that with 'faux' progress we stop trying. We rest, comfortably, because we use the word choice rather than because people with disabilities actually have it. Honesty brings change, pretense does not - something that by now we should have learned.

We all make choices that piss other people off. We all choose from an array of possibilities that, maybe should be prescreened. We all have to deal with making decisions on impulse rather than on solid investigation and information. I don't know how many times in my life I've given 'consent' that wasn't 'informed'. But, that's the stuff of adulthood.

So, here's to the day that instead of offering choices we respect them. Because in respecting choices we begin to respect the decision maker.


theknapper said...

Well said....now to really examine our practice.

Sher said...

Thank you so much for this timely post. I will have to chew on it for a bit in order to digest it, but it has given me food for thought as I do my work. Respecting choices. Do I do this? I'm embarrassed to admit that I suspect I offer choices. Respecting choices is so much harder because sometimes we think choices reflect on us as service providers. I will, again, do my work differently today keeping your words in mind. Have a great day.

Colleen said...

Dear Dave:

Well said and about time someone said this! "We offer choices" implies power - we still reign over the array of choices we offer - as you have said. Time to abdicate that power in favour of respect. I rather suspect that this will not be easy for many services and support workers.


Andrea S. said...

Re, today's post: I think there is an unfortunate risk for any new language attached to any new concept to become co-opted, redefined, and attached like window dressing to old practices. My first encounter with this was probably with the word "empowerment." This was a big concept in the social work training program I was in, back in the late '90s. We learned it basically the way you frame respecting choices here--where the clients are genuinely meant to be the people in charge choosing their own agenda, goals, and priorities and our role as social workers was meant to facilitate that and not choose their goals for them.

But then when I started reading certain blogs by some authors with disabilities (for example, Amanda Baggs at http://ballastexistenz.autistics.org) I learned that there were social workers out there in the field who were using the same language I had learned in relation to empowerment but were actually using it in disempowering ways where they would decide how the client should be "empowered" and not really take the client seriously if they tried to voice their opinion that the so called "empowerment" being imposed on them did not fit their own (client's) perception of what empowerment ought to mean.

It can also become an issue with funding. For example, a bunch of big funders in a particular field might decide, "Okay, from now on we're only going to fund programs that adopt an empowerment approach to working with clients." And they may mean well, but there might sometimes be misunderstanding among some of the individual people within funding agencies about what "empowerment" really means in actual practice--they might have a conceptualization of empowerment that isn't nearly so radical or paradigm transforming as it's meant to be. Others may understand the concept better but may fail to realize that other people using the same terminology they are aren't using it in the same way. And the agencies looking for funding might also either misunderstand what "empowerment" really means or just don't fully believe in it--but they know they have to use the word to get funded because that's the new "fad" among funders. So they start using the language without really MEANING the language. And not all funders are discerning enough to tell the difference.

Then clients hear the new language and, because they are never treated in the way the language was originally conceptualized, they, too, think it is only a fad that isn't any better than the last fad that left them disempowered, with suppressed voices. And the people in charge think the same thing (because they misunderstand terms like "empowerment" to mean what they actually see being done in the name of "empowerment" and not what the word was originally *meant* to mean), so they re-conceptualize it all over again: "We need to start offering choices ... or respecting choices" or whatever phrasing they decide to wrap around the old concept that "empowerment" was meant to convey. And the same process starts all over again. Because the words get changed, but the people using the words don't.

What we need is not simply better language--such as "offering choices" versus "respecting choices"--but better *understanding* and a change of heart to integrate that new understanding into one's daily practice. That's a lot harder than just choosing the right phrasing. Because the "right phrasing" will not communicate anything new if no one really grasps what it is supposed to mean that is different from what was said before. But how do we do it?

helencs said...

the issue I often have with services that "do" choice is that they often don't think about the capacity and information the person making the choice has. One man I worked with who had severe ID and ASD hadn't had a bath for 2 weeks because every night they asked him if he wanted one & he said no. He didn't know, and would have found it difficult to understand, that now having a wash was affecting whether people wanted to spend time with him and was the reason he couldn't go to work in the bakery as usual. The staff had a real problem with being asked to be clearer in the options they gave him such as, "do you want a bath or a shower?" or " would you like your bath before or after watching your TV programme". It took a long time to help them see that he wasn't really making a choice not to have a bath as he wasn't able to think of the possbile outcomes with the information currently provided.

Colleen said...

Andrea - so true - we need to not only change the language but the attitude. My second year DSW students can identify that service providers use the language of the day but don't do what the language intends. Is there a way to hold services accountable for doing what they say they do?

Belinda said...

"What we need is not simply better language--such as "offering choices" versus "respecting choices"--but better *understanding* and a change of heart to integrate that new understanding into one's daily practice." I agree Andrea!

We are wrestling through the difference between "holding values and imposing values" at our agency. It is so important to get that right and I am proud of the work being done to clarify the difference and make it an issue important enough to put a lot of work into.

And as Helen said, it is more complex than respecting choice. We also have to remember and understand the support someone needs when it comes to choices. There is as much art as science to the work of supporting people and I go back to Andrea's comment about changed hearts. If the heart is changed, we may still bumble a bit and make mistakes but I think that people will forgive them and we will be more aware when we make them.

Kasie said...

We leave it to the lowest paid of our workforce to cajole and manipulate the people we serve into doing things they wouldn't choose to do for their family, guardians or clinical staff, (the real authorities in their lives). Leaving the workers with the least authority, the most responsibility and the greatest risk of violating rights of people served. And, our hands remain clean? It's easy to say that a direct support professional is not offering choices in the right way, and that, that is why people don't choose to make good decisions. But, it feels more like we all give lip service to choice and self determination in order to achieve paper compliance. When we used to just "boss people around", we would often tell staff "don't offer a choice where there is no choice". Is it now the special of the day? You get to choose as long as I like what you decide. It is appalling and it is practically risk free for everyone but the persons served and the staff that provide direct support. You won't convince people that they really have a choice until we all completely and repeatedly respect their choices.
(Phew! Thanks for letting me vent. I needed that. Now, I must go and help change the world.)

Laurel said...

An interesting thought and I suspect you're very right. As a parent I have often been told to offer choices to my toddler as a way of not really offering choices. (Would you like to wear the green shirt or the blue shirt? Either way... you're gonna be wearing that shirt.)

Angelslake said...

Thank you so much for writing this today. I've been wriggling uncomfortably around the definitions of Personalisation and Person Centred stuff. Somehow, when those good things are brought close to services and agencies they start to feel scummy... now I know why I feel like that! Offering choices is like selling choices, but you already said it so clearly, we don't give choice, choice is already ours. People in power may choose to respect choice, but they don't give it. So glad you reminded me.

Dave Hingsburger said...

Andrea, I wasn't suggesting that we 'change language' I was suggesting that we 'change practice'. Offering is about power, respecting is about listening. These are two different behaviours. I too get tired of slapping new language on old concept. And for the record, I've been railing against the word 'empowerment' for a long time. Hate it. Don't use it.

CAM said...

I love the phrase, "dignity of risk". As service providers we are so concerned about being sure everything is in people's "best interests", not a bad thing considering the history of service provision, however, like everything else, it can go too far.
There is dignity in being able to take a risk, and dignity in owning the outcome, succeed or fail. But we are so caught up in the idea that we know what is best for people that we prevent them from experiencing that kind of opportunity for growth.

Lene Andersen said...

language matters. So many times, able-bodied people seem to think I'm as little nuts for getting lost in semantics, but it isn't semantics at all. How we use language says a lot about what we do. Offering choices does indeed sound good, but you're absolutely right - it reflects a paternalism that's really hard to get rid of.

Kristine said...

I spend a lot of time contemplating the definitions of dependence and independence (and interdependence, but that's not the point here). Part of my personal definition of independence is "the right and ability to make bad choices." Remember that day, probably in college, when you realized, "I can eat ice cream for dinner, and there are no parents to say anything about it"? Or the day, definitely in college, when you realized that class attendance was often optional? It's a good feeling to be an adult, and be irresponsible when you feel like it.

Sometimes people will criticize me for choices I make in regards to my own health. But, you know what? I'm 26. How many 26 year olds regularly visit the doctor and are super vigilant about their health? I'm perfectly aware of the consequences of my actions, and of the meanings of my disability--generally much more aware than the person trying to lecture me. I make informed decisions about my health. Sometimes they're responsible decisions, and sometimes they're not, but either way, I'm fully aware of what I'm doing, and I revel in my right to do it. Of course, I'm as responsible as possible when it comes to my job teaching middle school. I'm responsible with the kids. But in my personal life, I can be irresponsible. I can set my own values and priorities, and they don't have to make sense to anyone else. I really value that. I'm an adult, and I can eat ice cream for dinner if I want to!

bread and roses said...

Helen, I think you've quite handily illustrated the differences of intention Dave is talking about here. If your worry is that the staff doesn't think through the implications, I think the respectful thing to do is to tell the fellow, "you haven't had a bath in 2 weeks, and because of that you smell bad to some other people. If you keep smelling bad, they will avoid you. Also, you won't be able to work at the bakery because of the bad smell. You get to decide whether you want to take a bath or shower tonight, but keep in mind that if you skip the bath there will be those consequences, and I will respect you whichever one you choose."

Asking him if he wants a bath or a shower isn't offering choices, it's a particular tactic to control his behavior. It's limiting his choices, and being dishonest about doing that.

Now, I can imagine a situation where dishonestly limiting choices is ethically sound- but those are in situations where the person limiting choices has the same or less power as the person they're manipulating- or a situation where the manipulator knows that there's a serious risk that can't be disclosed and must be avoided. But that's more the realm of police investigations than daily living. But it's not respecting choices.