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.