More Thoughts on Inclusion

My last post was on inclusion for people with disabilities, with a strong emphasis on service provision. There is another area where "inclusion" needs to be considered and is perhaps harder to execute - personal interaction.

First, I'll give a broader definition of "inclusion". The definition doesn't focus so much on service provision, but is a more general philosophy:

A person is "included" when you don't (unnecessarily) treat them in a special way. In this definition, we assume that you have some default way to treat most people and 'special way' is defined as anything other than that.

This definition prompts that ugly question again - what is "necessary"? You can even argue that there are different levels of "necessary", such as safety, development, happiness, etc. There's also the question of what happens when you don't have a "default way". I will get to that later. The key point is:

"Inclusion" is all about trying to remove unnecessary special treatment of individuals.

It is fairly obvious how this applies to service provision. It means adding wheelchair ramps to regular buses, and getting rid of the special bus for people with wheelchairs. It means not having a separate room where children with disabilities go to learn. Canada seems to have tackled most of these issues already, and been quite successful from what I've seen and heard.

It is less obvious how this applies to personal interaction. We interact with our mothers, our siblings, our workmates, our neighbours, our children, etc in quite different ways. There is no well-defined "default way" to interact with other people because our relationships are all different. Is it acceptable to have a "special way" for interacting with a person with developmental disabilities? Perhaps it is, and I would assume there will always be some interactions which are unique to that individual.

But, as a society, we have some standard conventions for interacting with other adults. If we want to "include" a person with a developmental disability, these rules should still be followed unless we feel it is really "necessary". Off the top of my head, some of these conventions are:

• Avoid one-word command sentences (eg. "Come" vs "Come here please.")
• Avoid person-specific rote phrases (phrases which trigger behaviour)
• Provide a choice (eg. "Drink this milk" vs "Would you like milk?")
• Allow time to respond (the length of time varies per person)
• Follow their focus (observe their interests before pointing out yours)
• Avoid prompting (key phrases that supplement a normal conversation)

The sad thing is I see these rules being suspended a lot of the time in Timothy's life. All of us, as caregivers, rely on rote phrases like "Tim, buckle up" and "Tim, sit down". I could even hear Adelaide mimicking me this morning with "Tim, what're you up to?".

It's cute, but also indicates that I'm perhaps not doing enough to interact with Timothy in a normal manner. I say that same phrase every single time I see him in the morning. That single phrase by itself is fine, but using it every time does not represent anything close to the normal range of human interaction. I'm failing to interact with Timothy in a manner that I would use for a 29-year-old brother-in-law.

Why is this important? The idea behind "inclusion" is that a person with a disability will benefit when we (at least try to) treat them the same as others. They deserve a richer life, not a dumbed-down set of command sentences and rote interactions. Limiting his interactions with other people is no different to placing him in a separate classroom. We, particularly those of us who are deemed caregivers, must be critical and question our own interactions to ensure we're not falling into a trap of command sentences, rote phrases, prompting, and just generally "managing the individual".

P.S. I feel that some people will respond and say "rote interactions are normal", like saying "Hi, how're you doing?". That is true, but for Timothy to develop further we need to avoid rote interactions like the plague. His disability lends itself to rote interactions, and so his life is full of them. If we want to go beyond his disability we need to avoid frequent rote interactions.

Thoughts on Inclusion

We recently went to a disabilities conference as a family (Emily, Stella, and me). It's technically called a "leadership conference" because they're training us to be advocates and leaders in the field. When someone is being discriminated against and excluded by a system (school, workplace, etc), we should be prepared to help.

Much of the discussion revolved around the term "inclusion", defining what it is, seeing how we can make it happen, etc. Perhaps the simplest way to describe "inclusion" is as the opposite of what we see in many of today's systems.

• Today we tend to automatically place people with disabilities in a different stream of life. Special classroom, special bus service, special workplace, etc. This is mostly done under the belief that it is better for the people with disabilities. They get access to more specialist support services. It also has the side-effect of making our systems simpler to manage, more predictable, etc.
• 'Inclusion' is the idea of broadening/stretching existing services to accommodate people with disabilities. Same classroom, same bus service, same workplace, etc. This is mostly done because we believe that social interaction provides a greater benefit to people with disabilities, even if it sacrifices things like 1-on-1 time.

While it may seem a pretty clear concept, there are a lot of subtleties and differing opinions around 'inclusion'. Imagine a child with a disability who is seated at the back of the class, with their own 1-on-1 support aide, never interacting with the other students. Is that 'inclusion'? Well, it's a step in the right direction but is failing in many other aspects. Why are they at the back of the room and not randomly placed like other children? Why do the other children not interact with them (there can be many reasons, often tied to the skill of the support aide and the nature of the disability)? Should we just get rid of the support aide and ask the children in the class to work as a group and help each other, including the child with a disability? There are many, many opinions and just as many corner cases where there are no good answers.

Similarly, we know that there are going to be times when 'inclusion' is just not possible. Some people may need additional supports simply due to the nature of their disability. People who are blind cannot drive a regular car. People in a wheelchair require a toilet stall with more space and lower sinks. Some of these things are unavoidable, and we have to accept that. But is there some kind of a rule we can use to decide what we will accept.

I wrote up these three questions during the conference. Try answering them in order. I think they fairly capture when we should accept 'exclusion' or 'segregation' of any group of people:

1. Is it by choice? If yes, then it's okay. It's a special case, but someone may choose to be segregated from others. The elderly who want to spend time with others of their generation. The blind who find they can only really connect with other blind people. The developmentally delayed who are overly-anxious when outside their home environment. We have to allow choice for these people. That said, it must be a clear personal choice on their part - not something forced on them by a society that does not accept them.
2. Is it unnecessary? If yes, then it's not okay. This is by far the hardest question to answer, and there will always be varying opinions on what is necessary. I cannot provide an answer to that, except to say that 'unnecessary' exclusion or segregation is just not okay. Excluding by default because that's how it's always been done is not okay. Every time we feel that someone should be excluded, pushed to the back table at a fancy dinner, placed in a separate room during church, we need to ask ourselves why and whether it is truly necessary.
3. Is it temporary? If no, then it's not okay. This is by far the most important criteria. Assuming the segregation is not by choice, then it must be very temporary (eg. a trip to the toilet, an extra class to help catch-up, etc) or there must be an actively-pursued plan to end it (eg. aiming to get a job in a regular workplace). Planning to segregate someone indefinitely is not okay. Also note that a special bus, special toilet, special classes, special workplace, etc may be temporary and okay on their own, but the combination is a problem. From an outside perspective, this can result in seemingly irrational demands like "my child must ride the regular school bus". If the child's life is otherwise segregated, then that bus ride may be their only chance to really socialise. This is the rationale for such demands.

One curious thing is that the above rules can be applied to other situations. I hinted that it can work for the elderly, but it also applies to prisons, male/female toilets, and the legal drinking age. Are these segregations or exclusions by choice/necessary/temporary? It's a pretty universal set of questions.

Anyway, I've run out of time and things to write at the moment. I am sure I will have more in a week or so.

Representing Timothy

Every so often, we as a family need to write an application or a blog or some kind of communiqué as Timothy. Whenever we do this, we are representing Timothy to the world and must be very careful about making sure that representation is accurate.

We've been challenged a few times on the things that we write as Timothy. It generally comes down to "how do you know this?" or "has Timothy said this to you?". These challenges are very useful because they force us to re-assess what we're saying and really check if they represent Timothy. I enjoy every challenge we get because it can be a tough mental exercise, verifying and justifying the content of what we're writing. It also gives us some confidence that we're representing him correctly, because we can justify it.

Here's a few examples:

• "I enjoy photography." How can we verify this? Well, we imagine a hypothetical ordinary man who can verbalise his interests, and what his behaviour would be like if he enjoyed photography. We then observe Timothy and see if his behaviour matches. In the case of photography, we feel it does. On his last outing with a camera, he held the camera up, pointed it at something of interest, and took a photo an average of once every 22 seconds.
• "I enjoy going to McDonalds." Same basic process, but a lot easier to judge. Timothy is happier at McDonalds than when he's not at McDonalds. :)
• "I think McChickens are the best burger." Much trickier for us to verify. Before we could write this we want to observe that, given (almost) any other food choice, he would choose a McChicken. Fact is, he probably wouldn't prefer a McChicken as it doesn't contain a pickle.
• "I want to learn more about photography." This is tricky. What does it look like when someone wants to learn about something? Timothy tends to learn by mimicking and/or exploration. Timothy does not always mimic our behaviour, so when he does it is a good sign he is interested in doing the same thing as you are. When he explores on his own (eg. playing with camera settings, taking photos of objects you never even tried to photograph), you can be fairly sure he is trying to learn.
• "I hate that root beer looks like Coke. I always get tricked by it." Hehe, actual fact. He is not happy when he grabs a glass of root beer, drinks it, and finds out it's not Coke. Coke seems to be the only pop he actually enjoys.
• "I dream of being an artist." Yeesh, tough one. What does Timothy dream of being? Well, we'd probably look at how he tries to see himself. Does he prefer photos where he's holding a camera, or where he's learning to cook, or where he's playing with his niece, or... I don't think we've gathered enough information to know what Timothy dreams of being, and so we can't really write such things.

Anyway, this blog was primarily just to say thankyou to the people who challenge us to be as authentic and true in our representation of Timothy as possible. As you can read above, we are trying our hardest. At times we can slip-up and inject our own views or beliefs, and it is good to have someone there to call us out on that.

P.S. Sometimes we get suggestions to prefix statements with "My family believes..." For example, replacing "I will be happier in my new home" with "My family believes I will be happier in my new house". That kind of prefix doesn't really solve the underlying issue. It's actually easier to verify "Timothy believes he will be happier in the new home" than it is to verify "Timothy understands that his family believes he will be happier in the new home". We can observe Timothy smiling when he enters his new bedroom. We can't observe Timothy understanding our conversations.

Adelaide's (Almost) Talking

For the last few months we've been trying to teach Adelaide to sign using her hands. We've tried words like "Daddy" (make a sign like a rooster on your forehead), "Mummy" (same thing but on your chin), and "Poh Poh" (Grandma in Cantonese, and looks like the rooster is running away). But the easiest word to learn has been "Nai Nai" (which is Milk in Cantonese, and looks like you're milking a cow).

Adelaide is now regularly signing "Nai Nai" with her hands whenever she wants to feed. There's no prompting from us, she just starts signing. We look at her and ask "Do you want Nai Nai?" and she smiles and signs again. Often with both hands, which isn't technically correct, but we give it to her. :)

But in the last few days she's started saying "Nai Nai" aloud herself in combination with the hand signs. Is this her first word? We're not 100% sure, but we'll probably know by the end of the month. She signs for "Nai Nai" so often it's become a bit of a joke at times. If "Nai Nai" is her first word, she's got plenty of opportunity to say it.

And this leads into the funny thing that happened yesterday. Adelaide was rolling around in bed (supposed quiet time while we try to get her to sleep), heaved a sigh and said something like "mamamia". She then made the sign for "Nai Nai", prompting Emily and I to sing...

Mama-mia
Here we go again
Nai nai
How can I resist ya?

Sorry, just had to share that. :)

Body Pains

Last night, I rolled over in bed and left shoulder had a brief 'pop' with a matching burst of pain. Joint weakness and pains aren't unusual for me, but the left shoulder is kind of new. My comment was something like "Argh, my left shoulder just started hurting." to which Emily replied something like "If I had a dime for every time you said 'Argh, my [x] just started hurting"...

This got us thinking. I do say things like that a lot, just because of random joint problems I have. The following is a list of a few common phrases in our house. They apply to pretty much any joint (hip, knee, elbow, shoulder, fingers, wrists) because I've had problems with all of them at some times. I've even woken up to find my fingertips 'popped out' because I'd slept on them. Twice.

• Hmm, I think I just did something to my [x]. It doesn't feel right.
• Hmm, my [x] just started hurting. I think that's new.
• My [x] is playing up again. Can you do [y] for me?
• My [x] feels odd. I'll try not to use it for a bit.
• Heh. I stood up, and something went wrong. I should sit back down.

I used to fear that I won't be able to play with my kids the way I want to. Tow Adelaide around in the snow, carry her on my back, etc. Luckily, my body seems 'resilient'. No matter how often I get these pains, they'll go away with time and stretches.

On any given day I can never be sure of what my body will be able to do. But I can be sure that some day my joints and the planets will be aligned in their proper positions. If only for a little while.