Cognitive vs. Physical Disability

As part of current discussions on various laws, treaties, etc, regarding the treatment of disabled people, I’ve seen some discussion by people with physical disabilities who are questioning whether people with cognitive disabilities can or should live in the community – or whether an institution is a better place for them.

First, we need to define our terms.  Most people understand what a physical disability is, but the term “cognitive disability” is a bit harder to understand.  It is a broad term, and can include everything from dyslexia or a learning disability through mental retardation and psychiatric illness.  People usually draw a distinction between cognitive and emotional disability, but it’s still a very broad category – just like physical disability is.

One of the mantras about disability has historically been, essentially, that a physically disabled person may have a “broken” body, but has a perfectly working mind.  Of course this isn’t true – plenty of physically disabled people (who’s bodies may or may not be considered broken by themselves) also have other types of disabilities, including cognitive disabilities.  But, regardless, this is a common statement by people with physical disabilities.  It’s also common in people’s understanding and sentiments towards old-age.  How many times have you heard about someone having health issues, but heard “he’s still extremely sharp” or similar statements?  The implication is that as bad as health and physical disabilities may be for some people, as long as the mind is unaffected it is okay.  This of course means that there is a value judgement made about disabilities that affect the mind, typically without actually consulting those who have those disabilities.

Fortunately, this type of thinking is becoming less and less common among people with physical disabilities, probably due to increased visibility of the scope and breadth of the disabled community.  But it still exists.

A lot of people believe people with “broken” brains need 24×7, intensive care.  Many people believe (wrongly) that institutional care is 24×7 care.  Just because there is staff around, even at night, doesn’t make it 24×7, nor does it make it intensive care, nor does it make it one-on-one care.  People who need intense 24×7 care can’t receive that in many – if not most – institutions.  In most institutions, people are left alone and bored for long stretches at a time.  That’s not care, that’s neglect.

The reality is that most people placed in institutions do not need to be there.  Yes, I recognize that there is a place for keeping some people separated from society – but only when there is a danger that can only be mitigated this way.  Most people with cognitive disabilities are not dangerous.  They just need assistance in ways others might not.

For example, people who have cognitive disabilities might have trouble in some of the following areas:

  • Preparing meals
  • Shopping for essential, necessary items (like food)
  • Managing money
  • Completing paperwork and official forms
  • Scheduling and getting to doctor’s appointments
  • Driving and Transit usage
  • Daily grooming/bathing

Interestingly, the above list could also apply to physically disabled people, albeit for different reasons:

  • Preparing meals – motor skill issues, lack of accessible design (counters, sinks, etc, within reach)
  • Shopping for essential, necessary items (like food) – energy level, lack of accessible stores, lack of transportation
  • Managing money – Difficulty handling coins, bills, and checks.
  • Completing paperwork and official forms – motor control issues, ability to get to/from mailbox in an inaccessible residence
  • Scheduling and getting to doctor’s appointments – energy levels, accessibility of doctor’s office.
  • Driving and transit usage – inaccessible vehicles, poor scheduling of transit, space and logistical concerns around auxiliary aids
  • Daily grooming/bathing – inaccessible bathrooms and utensils, motor control difficulties, ability to reach all parts of the body

In other words, a disability – whether physical or cognitive – can affect essentially exactly the same areas of life, albeit in different ways.  And, just like with cognitive disabilities, there are all manner of abilities and lack of abilities present among people with physical disabilities – some live with only the traditional supports of society (like farmers who raise our food, which we need to survive but lack in ourselves the ability to raise), while others need intense, 24×7 assistance.

Most disability needs don’t require ICU-like 24×7 observation, whether cognitive or physical in nature.  They might require help at key parts of the day, and with key tasks.  Or, they might just need to be done differently, but still independently.

For instance, here’s how a hypothetical person with a physical disability might manage some of the tasks listed above:

  • Preparing meals – an accessible kitchen, electrical kitchen appliances, adaptive utensils
  • Shopping – shop-at-home services, accessible stores and transportation, sit-down shopping cart
  • Managing money – using debit cards, banking online
  • Complex paperwork – typewriter, computer scanner/printer
  • Getting to doctor’s appointments – accessible vehicle, accessible doctor office
  • Driving and transit usage – adaptive vehicle controls, accessible taxi, paratransit with good scheduling
  • Daily grooming/bathing – “roll-in” shower, adaptive razor and other grooming items

Of course these things won’t solve every problem, and sometimes the best solution to a problem is another person.  There’s nothing wrong with that.  But it seems people are a lot more creative when it comes to physical accommodation than cognitive accommodation.

Some cognitive accommodations for the same items:

  • Preparing meals – visual menus, visual recipe, simple recipes (minimize multitasking)
  • Shopping – shop-at-home services, shopping list (visual or written), shopping computer/tablet application (to keep in budget)
  • Managing money – specialized computer applications, “cash budgeting” or “envelope budgeting”, pre-defined shopping lists, auto-debit for routine expenses
  • Complex paperwork – simpler forms, copies of old versions of the forms (filled out), alternative processes (such as asking questions orally at the doctor’s office rather than requiring a form to be filled out)
  • Scheduling and getting to doctor’s appointments – pre-scheduled recurring appointments, taxi or good paratransit, electronic reminder devices
  • Driving and transit usage – electronic reminder devices, checklists, step-by-step directions (pictorial or written), good paratransit, taxi
  • Daily grooming/bathing – visual schedule, electronic reminder devices

Yet, for some reason, people can much easier accept someone who can’t fill out a form because of a physical disability than one who can’t fill it out because of the complex language or concepts on the form.  One is considered worth accommodating.  One is not.  But it doesn’t have to be this way.

Certainly, again, I’m not suggesting that non-traditional assistance is not required by people with cognitive (or physical) disabilities.  Obviously many people do need it!  There is nothing wrong with that, and I’m not suggesting that people should never need that.  But I am suggesting that the things people need are not always 24×7, 1-on-1, intensive care.  Sometimes they just need some help with some key tasks during their day.

There is one thing missing from most people with disability, one thing that never makes it to the lists like the ones I used above: participation in community life.  Too often, people with disabilities, whether in institutional settings or at home, end up sitting alone, lonely, and bored too much of the time.  While the internet has been a huge help to this (much as TV was to a previous generation), that’s insufficient.  Yet, other than programming without consideration for a person’s interests, desires, goals, hopes, or dreams, this is ignored or treated as baby-sitting.  I suspect solving this problem will take more support than most disabled people get today, and I’ll write more about it later.  But simply moving boredom, restrictions, and loneliness from an institution to a person’s own home is not progress – I’ll agree on that.

But I won’t agree that it has to be this way.

What Makes a Good Communication System…Part 4

Previously, I mentioned the need for a way to say no, the need to be able to report abuse, and the need to be able to be inappropriate.  For this post, which I think will be the final post in this series, I want to talk about the value of babble.

A close-up of a magnifying glass with a blury background that may be a desk

Magnifying Glass by Auntie P (Flickr), Licensed CC BY-NC-SA 2.0

Since I wrote JTalk years ago, I’ve talked to many users and parents about how my text-to-speech software was and is used.  Very few people use it as I thought they would.  Instead, I’ve heard some neat stories about how the software is making people’s lives better in ways I wouldn’t have predicted.  One of the more common usage is to connect meaning, sound, and writing.

It’s a conceptual leap to realize that symbols can have meaning, whether those symbols are letters on a piece of paper or sounds made by someone’s vocal cords.  Once that leap is made, however, people typically want to explore the symbols, their relationships, how to write them, and how to say them.

With the users of JTalk, there were three things I heard multiple people doing:

  • Typing repetitive “gibberish” and having the computer speak it
  • Typing something to communicate, listening to the computer speak it, then repeating the words vocally
  • Typing words to hear and then “practicing” alone, having the computer speak the word and then speaking it vocally

The first of these, typing repetitive “gibberish” and then having the computer speak it, consisted of something like typing long strings of a single letter (“TTTTTTTTTTTTTTTT….”) and then hitting speak.  Or it might consist of a repetitive sound, like “Wowowowowowowowowowowowowowowowo…”  In effect, these might be seen as stims (they are repetitive, and that can be calming or grounding).  But I think more may be at play here, at least some of the time.  Just as a neurotypical starts with vocal language by babbling and making nonsense sounds, some autistic people may do the same when they come to language late.  Further, this type of sound play is linking a symbol to a sound (“what does ‘wo’ sound like?”).  In effect, it’s teaching a person that these sounds can be strung together in ways that produce desired output – something people who speak do every day.

Of course I won’t ignore or dismiss the value of it just from a stim standpoint!  But it is more than that for some people.  Unfortunately, this type of sound play can also be annoying or distracting to others.  Certainly there are times and places where it is inappropriate, but it’s important to ensure that there is a time and place where it is appropriate!  There’s real learning and language development here for some people (and for others, it’s just plain calming to have control and assurance of what comes next).

Other people might type something and then hit speak, listening carefully to what is said.  Then, they can repeat the words using their own voice.  I don’t do this so I don’t know for sure what people’s motivations are, but it seems as if it gives people confidence and a reference point to anchor their own speech.  They can hear the words and know what they sound like (they may already, but this will give extra confidence).  Regardless of the reason people do it, this seems to give people the confidence they need to initiate and respond to others verbally, when they would have remained silent otherwise.  So despite the apparent repetitive nature of this, it’s a good thing!

Yet others practice words in private.  In effect, it’s a way of people learning literacy, albeit backwards from how most neurotypicals learn it.  Most neurotypicals learn audible language first, then written language.  So they may need occasional help to connect the symbols on paper to sounds they already know.  Some autistic people do better in writing, so they may have a much larger written than spoken vocabulary (I’m one of these people).  They may know a many words that they can read and write, but can’t speak.  What better way than to have a non-judgemental and infinitely-patient device pronounce the word, as often as you need it, as repetitively as you need it, to get a handle on the word?

I suppose these things have less to do with the construction of a communication system than the uses that a system has.  But they are vital – it’s important a person with any communication system (including the standard vocal system!) gets a chance to play with sound and symbols, to develop the connections and confidence they need to communicate.  It’s also interesting that these types of activities are sometimes complained about by parents – particularly strings of “nonsense” sounds being emitted from a device.  It seems some people expect someone to take a new means of communicating and instantly speak deep thoughts eloquently to everyone.  Few people do that!  Most of us need to learn to use our communication tools, which involves a lot of just plain tinkering with voice, symbols, sounds, etc.

These activites fascinate me in another way, too.  I wrote JTalk for people who wouldn’t speak in some situations – yet I see people using JTalk (and other devices/software) so that they can speak more!  A common concern parents and others have when a person uses some speech is given alternatives to speech is that allowing someone to type (or gesture, symbol, write, etc) when they can talk will remove incentive for speaking from the person.  Quite the opposite seems to be the case – in many cases it seems having the speech device or system encourages people to speak more!  Trust me, as a part-time speaker, I’ll speak when I can speak and communicate my thoughts clearly.  Why wouldn’t I?  Unless it’s painful or difficult at the time (which means I probably wouldn’t communicate at all without alternatives), or completely inaccessible, speech is just plain easier and quicker.  It’s naturally self-reinforcing.  I don’t need communication alternatives removed to grasp this!  And, for me, having alternatives handy means I’m more willing to stretch myself and speak more – since I do have something to fall back onto for an emergency.  I don’t need to preserve speech energy for emergencies that rarely occur!

All this said, there’s a lot to designing communication systems, and a lot to understanding how they are used.  I’m not an expert on this, although I have a lot of experience personally with my communication needs.  I encourage people to learn more, both from users of speech alternatives, from family of users, and from clinicians.  There’s a lot more to this than just my opinions.

What Makes a Good Communication System…Part 3

A bunch of text, including *(#! #W:# and similar text, to stylistically represent internet cuss word obfuscationI’ve written about what makes a good communication system.  This time, I want to talk about newspeak and why it’s important to include controversial words in a communication system.

(Previously, I wrote about the need for a way to say “no” and the need to be able to report abuse)

I remember a talk a few years ago at Autreat where an audience member, during a demonstration of various AAC equipment, talked about how she didn’t like that a device had an icon representing a popular fast food joint, since that was essentially free advertising of the chain, the chain had very unhealthy food, and a child with such a device would then be asking to go there more often, when its’ more desirable to go elsewhere.  I’m probably paraphrasing things wrong, which is why I’m keeping this somewhat vague.

I had a problem with that thinking.  Sure, a parent may decide it’s a bad idea to go to a fast food chain for their child, which is certainly a parent’s right (and, frankly, probably good for the kid’s health).  But eliminating the vocabulary to ask this is not encouraging communication, nor is it providing the same sort of teachable time that a child who speaks would present.  A parent has the right to say no to a child’s request.  And, in fact, parents do so quite often – for the good of their children.  Eventually children learn that some things are off-limits and that continued pestering of the parents will result in negative consequences.  As for the icon choice being free advertising, how else would you represent a fast food chain?  The brand logo seems like an obvious choice!  (note that I did agree with her that only including one fast food eatery isn’t a good idea – any system should strive to include multiple options.

There’s far more controversial things than fast food chains, though.  If you spoke during primary school, do you remember when you first said a naughty word?  For most of us, I’m guessing that was pretty much the first year we were at school.  Certainly most of us knew enough to not say it in front of the teacher (although some of us probably learned that one the hard way!).  In other words, we learned an proper time and place for cussing: you can laugh about the words with your friends on the playground, but don’t do it in front of any adults or any tattle tales!  This is a huge lesson when it comes to communication: language use should differ in different environments.

So, when should a child have cuss-words as part of their vocabulary, if they use a non-spoken language system?  The answer is, for parents and teachers: before you would like them to!  Certainly a school or parent shouldn’t spend hours teaching how to cuss, but the language should be subtly made available, and consequences of its’ use should also be made available!  If the child does cuss at mom to get a reaction, it’s entirely proper for mom to react – just not by eliminating vocabulary.

Likewise, when was the first time you might have talked to another kid about sex?  Once again, it was probably well before it was “age appropriate” in the eyes of parents (who probably would prefer those topics to wait some time).  A language system needs the words that a 13-year-old will use when secretly looking at Playboy magazines with another kid.  You might not want a 13-year-old to look at Playboys, but that doesn’t mean he shouldn’t have the language to express himself.  You don’t duct tape the mouth of a typical child so he won’t talk about naughty pictures with a friend!

In 1984, George Orwell describes a future where words are eliminated from language to ensure “goodthink:”

“Don’t you see that the whole aim of Newspeak is to narrow the range of thought? In the end we shall make thought-crime literally impossible, because there will be no words in which to express it. Every concept that can ever be needed will be expressed with exactly one word, with its meaning rigidly defined and all its subsidiary meanings rubbed out. … Every year fewer and fewer words, and the range of consciousness always a little smaller.”

Sadly, I’ve seen communication systems for Children programmed to offer a sort-of “newspeak.”  I’m sure it also happens with adults.  It’s convenient to never have anyone bring up any uncomfortable subjects, never have words that cause disruption.  But it’s not how typical children (or adults) communicate, and it’s not how people with communication disabilities should be forced to communicate.

Certainly different people need different vocabulary, but I very much support a vocabulary system that can include words that may not be the focus of instruction, and may even be “inappropriate.”  Newspeak is not an alternative to teaching proper language use!

Unfair Disability Advantage?

There’s a bit of controversy over one of this year’s 400 meter Olympic runners.  Oscar Pistorius of South Africa is competing on artificial legs.  Some have questioned whether his legs make him faster than non-disabled athletes, although the scientific evidence is a bit mixed.

For a bit on the story, see this Star Tribune opinion piece.

It’s a bit ironic since normally we face the issue of being seen as less able than non-disabled peers.  In this case, he’s seen as more able.  There are lots of other interesting questions here too, such as, what differences are “unfair” in the Olympics?  After all, Olympic athletes are unusual, and have unusual differences that let them compete at an amazing level far beyond the abilities of most of the rest of us.

Earplugs, Anyone?

While looking for some motorcycle earplugs, I found www.earplugstore.com.  While I haven’t yet ordered from them (but plan on it!), I was very impressed with their selection of earplugs and similar items.  I know many of us struggle with a loud world and look to earplugs or other hearing protection.  But I know many of us also struggle finding comfortable hearing protection (I recommend the “Hearos” brand – very soft and very quiet, but too quiet for using on a motorcycle, unfortunately).  This place looks like it might be a good place to take a look around.  Interestingly, in the “About Us” section of the site, the site owner mentions she’s a parent of an autistic child.

No,  I don’t get a commission or anything – I have no relationship with the store other than my plans to become a customer. So please comment below if you’ve had good – or bad – experiences with this place.