How Do You Give Consent When You Can’t? by metametheus

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palnet · @metametheus ·
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How Do You Give Consent When You Can’t?
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#### The tough part about working with those are Intellectually Disabled is abiding by their natural, human rights. The problem isn’t so much observing these, but it’s understanding what they want in the first place.

In a [previous post](https://palnet.io/palnet/@metametheus/communication-breakdown-lessons-from-working-within-the-disability-field-4nlzlg7f) I wrote about the challenges of working with a non-verbal, intellectually-disable client.

In Australia, the rights of all disable people are protected; this has come about because there have been *many* cases of horrid and systematic abuses to the most vulnerable sections of the community — those who have not had the capacity to speak up. Even children have the ability to tell someone about abuse they may experience and tell others who is doing it. 

There is funding available to disabled people to access services like Occupational Therapists, Behavioural Psychologists, Speech Therapists, and so on; there is even funding to pay for Disability Support Workers (DSW) to help them build capacity and live as independently as possible.

Living with dignity involves being able to choose the path of your own life. I see it with my disable clients all the time that they are being ‘asked’ to do something or participate in an activity because their parents/guardians want them to, or because a professional has suggested it to “build capacity to have an enriched, fulfilling life”.

It’s really obvious to me that my client doesn’t want to do something I’ve been directed to take him to. He shuts down, stops engaging with me, and his behaviour becomes quite challenging and unmanageable.

The problem is, he can’t communicate to me what he *does* want to do; because he hasn’t learned to communicate for 29 years, trying to understand what he wants is near impossible.

Like today for example. He was able to indicate ***NO*** when I suggested his usual Monday morning activity. Awesome!

The problem was that’s where the communication ended. I put forward some other suggestions, and got neither ***YES*** or ***NO***. So what do I do?

I want his consent to assist him so he can enjoy his day. Maybe he just wants to stay home and chill... I don’t know however, as he seems to be unable to be clear.

<hr>

It got me thinking about the whole issue of *consent*. It’s been a hot topic for a couple of years, as we come to understand that a lack of consent either way may not actually *be* consent. This has been what has fuelled the #metoo movement.

I’ve seen the issue of consent as a minefield in the medical/health industry. Some medical professionals use fear (usually of pain or death) as a way to gain consent to procedures or treatments that the patient is not 100% sure about.

I was involved in some education around consent issues in the local Tantra/Conscious Sexuality a few years back (now *there* is a field where there are huge issues) and the thing we used to teach was that: 

Yes = Yes
No = No
Not sure/undecided/maybe = No

You’d be surprised how many Tantra teachers, gurus, and ‘sexuality practitioners’ get that horribly wrong!

<hr>

The issue I’ve noticed in both the medical and sexuality fields is the notion of *manufactured consent*. Noam Chomsky has co-written an [excellent book](https://www.goodreads.com/book/show/12617.Manufacturing_Consent) on it. 

The idea is simply that you create a frame around what you want people to consent to by constructing a narrative where the alternative *appears* so undesirable that there really is no other choice.

Imagine a doctor saying to you, “take this drug or you’re going to die!” What would you do? Or worse, the threat was made on your children....!! This is how the vaccination debate has deteriorated, with both sides using such methods to push parents into consenting with their views.

*Manufactured consent* is everywhere. It’s the way salespeople ‘convince’ you to buy their product/service. *Persuasion techniques* using methods of Ericksonian Hypnosis and NLP are regularly taught to salespeople, life coaches, business executives, Public Relations seminars, and utilised by politicians, mass media, and corporate spin doctors.

<hr>

Coming back to the problem with my client, I consider whether my suggestions to him are to benefit him, or me.

While I don’t him to be out in the community feeling anxious, the reality is I also don’t want to be in that position. But I have the capacity to manage my own emotional states well enough to remain grounded and calm in a situation when my client is unable to.

I do have to think preventatively, and consider what we can do that is going to be “enriching and fulfilling” but is not going to add to his inability to deal with even the simplest of life’s normal challenges.

I can’t pretend to know what’s going on in his head; but at least I can try my best.

[*Photo courtesy of Philipp Wüthrich on Unsplash*](https://unsplash.com/photos/2HMrBMbbbYg)

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@torico · (edited)
this has a neat tie in to a discussion i was having earlier surrounding government decision making, individual consent, and the right to life. when is one persons lack of consent to governmental action more important than the group need for consensus to protect the environment?

is consent manufactured if people agree to it, knowing the risks and negative consequences? for instance if i consent to drugs knowing they will save my life for another three years but blind me? 

i agree that government makes some shitty decisions. where do we draw the line?
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vote details (1)
@metametheus · 
When we start talking about *consent* in a larger, social context it becomes a veritable moral and ethical minefield; no doubt about it.

However — at the end of the day, consent is still a personal matter. 

This is why in medical ethics (as well as in the disability field), we talk about *informed consent*.

In the example you used, a doctor tells you "take this drug it will save your life" and you consent. You then find out afterwards that it will blind you. Yes, you did initially give your consent, but you were not appropriately informed if you didn't know of the consequences of blindness. Would you still have chosen to take the drug knowing you may go blind?

On the other side of this is *informed denial*, which the medical profession has a really, really big problem with. The problem is that *all* doctors (irrespective on your views on the profession) truly do believe and hold to the Hippocratic Oath: **above all, do no harm**. It is often heart-breaking to have a patient deny treatment you *know* will ease their pain. You do everything possible to properly inform them, and still they will not consent. It's bloody hard! And herein lies the ethical issue... as a medical professional, do you accept the *informed* denial of treatment? Whose will is more important?

I don't feel there is an easy answer to this.

The problem in the disability field is two-fold: can the participant give their consent; and if they do, do they truly understand what they are consenting to, given their intellectual disability?

A frikkin' minefield!

😊🙏🏽☯️
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@torico · (edited)
first off, i have a friend who does work similar to you. for little consents as "can i rub your back", its easy enough. for big decisions, no, i dont think they are able to understand enough to give consent. even normal people have a difficult time understanding doctor lingo, and many doctors refuse to take the time to explain in laymans terms. medical advocates should be a thing, to protect the interests of the patient if a family member cant or wont participate.

second, two sides to the "do no harm".
having worked in oncology for several years, and also from dealing with workmans comp doctors for over a decade, doctors who are arrogant or blind to their own lack of knowledge are far more common than one would think, and they can do harm without intent.

some doctors want to do what they think is best, and adhere to western medicine standards, which arent always the best way to address all symptoms. some doctors also believe that being the trained professional, only they know whats best for the patient, regardless of what the patient tells them. they fail to give their patient any credence.

example: i injured my shoulder at work. after doing some tests, the doctor diagnosed me with neck strain. I went thru years of therapy, but my symptoms never totally resolved. I was left with acute muscle strain from not being able to use my left arm properly.

The doctor negated my belief that my shoulder was involved and refused an MRI because the xray showed no issues. I could not afford to pay for my own MRI.

seven years later, after a severe re-occurence of my symptoms, i went to an outside doctor on my own dime, only to learn that my shoulder had been partially dislocated for seven years. after an arthroscopic surgery, that shoulder is 90% better. however it still left me with exacerbated muscle issues in my back and neck. because it was workmans comp, i had no recourse for damages other than medical expenses. 

this is how consent gets thwarted. when the patient does not have the knowledge they put trust in a doctor. if a patient has no economic resources to combat the insurance system by hiring a lawyer, and the doctor refuses to be open to the patients own self knowledge, it becomes a betrayal of trust. its a slippery slope to prove the system meant harm, but at the same time they caused harm thru their own procedures and prejudices.
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@joeyarnoldvn · 
It all comes down to individual private property rights.
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@psych-guy · 
Hang in there. This is the hardest part of support work. The fact that you think about it in these terms puts you ahead of many in the industry.

I have worked with many challenging clients over a number of years. Consent comes down to how confident we can be that any communication from the client reasonably represents their agreement or disagreement.

Concrete, unambiguous gestures increase our confidence in the clients consent. If the client is verbal, get a verbal response, and a gesture response (like a 'thumbs up') as well. If non-verbal, work on two  concise gestures each for a 'yes' and 'no'. Make sure they are meaningful and unambiguous. 

Think of it like Two-Factor Authentication. If you require consent, make sure you get a 'yes', and 'thumbs up' before proceeding. Break it down for them. Ask once for a verbal resonse ('Would you like to go to the movies?'). Then again for the gesture ('Can you show me if you would like to go?').

When you record your notes for the day, you can better justify how you determined client consent. Talk to your Allied Health Team. If they are decent they will be on board with something like this. A system like this takes time, so be patient.

Be Well my friend and Strive for the Good
👍  
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vote details (1)
@metametheus · 
Thanks for the words of encouragement.

I've been working a lot with Dr Rosemary Crossley, who has really taught me a lot about communication. With this client in particular, he really hasn't had the exposure or 'training' in communication for 29 years... so we are really starting from scratch here, but he is showing amazing signs of progress. Yes/No is all I'm doing, but he 'answers' about 30% of the time.

Having said that, the more I work with him, the more I am seeing patterns of behaviour and other signs of non-verbal communication, so I'm getting to understand when he is 'liking' something, and when he doesn't. It's still not fool-proof, but there is a pay-off.

My other non-verbal client is really good with communication; he can gesture, use hand signals for yes/no, and I help him type on a device. We have some great 'conversations', but he's also had the benefit of parents who believed in his ability from a young age!

Thanks again!
😊🙏🏽☯️
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@psych-guy · 
No worries. It helps to know we are not alone in our challenges :). Sounds like you have a good support structure under you.  30% is pretty good. Belief in ones ability is so important. I used to write instructional guides for other support workers about my clients gestures/behaviors (with appropriate approval of course). That way if you or the client leaves, the next support worker doesn't have to start from scratch. 

Thank you for actually caring. I'm not really sure how Steemit works yet or how much I'll be on here, but feel free to reach out if that would help you. I left the industry a few years ago. It wasn't the clients, but dodgy support workers and the bureaucracy.

Have a great day!
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@tonygreene113 · 
Consent to what? Picture taken in public or to a sexual act?
The range is wide on this one.

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@contact02 · 
That’s a good question but an emancipation form would be the answer 

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