Autistics Speaking Day

I want to say something. So here goes: FUCK.A bunch of text, including *(#! #W:# and similar text, to stylistically represent internet cuss word obfuscation

Seriously.

No, I’m not trying to make the blog unsafe for kids (that said, I’d love to meet the kid who hasn’t heard the word “fuck”).  But this is a huge part of what I want to say: we will say things people like.  And things they don’t.

We’ll cuss. We’ll insult people. We’ll talk dirty. We’ll lie. We’ll do all the things that the sanitized, nice, touchy-feely movies about escaping from autism or about how there are geniuses in the autistic population won’t say.

We say – if we’re allowed – these things even if we use speech devices. Too often, we’re silenced by being given devices that don’t speak these words. (hint to parents: if your child uses a speech device that uses a language system – not just spelling, but a word-based language system – and it doesn’t include some words you don’t ever want to hear said, the vocabulary is too small for your kid) Seriously, kids cuss. So should autistic kids. Just like neurotypical kids, we need to learn what is and isn’t appropriate in what context. Whether you like it or not, it is appropriate for two fifth graders to share lists of cuss words with each other. It’s not appropriate to do so in the hearing of an adult. That’s a pretty important social lesson to learn – that your communication needs to change based on audience. How do you learn that if you’re only options in language are always appropriate for the adults?

We say we’re horny. That we’re aroused. That we want to have sex. Maybe even that we want to fuck. Just like a neurotypical does. Sure, there are all types of sexualities among autistic people, including asexuality, but most of us aren’t asexual. So we want these things. And need to talk about it. Yes, there are more and less appropriate places. And, yes, we may or may not have our parents’ moral values. But we need the same rights that any other adult has – the ability to express our sexuality, including expressing it in ways that while legal may not be what our parents would like.

Too often, we live in group homes or institutions where the staff fears the complications that a sex life would bring into their own jobs. Or have religious views about what sex is or isn’t okay. That’s fine if we willingly agree to those rules and have real options and places to live that don’t include those rules. But most of the time, we don’t get that choice when placed into group homes or institutions – we have to take what we get, or run away. A neurotypical might choose to live in a monastery. An autistic shouldn’t be forced to. Yet, studies have shown that many – quite possibly most – group homes ban homosexual relationships while allowing limited (usually way too limited) heterosexual relationships. It’s another place where our desires don’t matter.

We also need to be able to say “NO.” As in, “No, I don’t want to go to work today.” Or “No, I don’t want to eat that slop.” Neurotypicals get to do this. Sure, there are consequences (although often we get away with some of this – how many people use a sick day when they aren’t sick?). Heck, sometimes a neurotypical might wake up in the morning and decide – for better or worse – that going to work sucks, that there is more in life than their job, and that they really don’t want to go to their job. Ever again. Yep, that causes unemployment sometimes, but it’s something many neurotypicals have done sometime in their life. They were allowed to. Sure, there are consequences. But they weren’t prevented from making the choice in the first place.

So I guess that’s my theme: if people want us to speak, you need to let us speak. Even when we say shit you don’t like. We’re not pets, we’re not puppets. We’re human. And that means you won’t like every moral choice we make. Just like I won’t like every moral choice you make. That’s life.

 

Notice Anything Missing?

frontlineFrontline (PBS) did a program recently on assisted living facilities (you may be able to watch it – I don’t know if there are geo restrictions or not, but I can see the video as a US resident).  For people who don’t know, these are the mostly unregulated places that are sold to older people (and their families) as “better than nursing homes.”  However, as this program explains, they too often come with problems too.

But, that’s not why I’m writing this.  I’m writing because something was missing from this program.

No, I’m not writing about the program’s bias towards nursing home care (you need nursing home care to prevent bed sores in elderly disabled people?  Really?!).  That was a problem too, but that’s not what I’m writing about.

I’m writing that not one single resident of an assisted living facility was part of the program.  Not even one.

Oh, they’re crazy batty old folk.  Why would they matter?  Why should their voice be part of a program about how to treat old folk?

I’m kind of used to this.  I’m kind of used to watching TV programs about autism that don’t include any autistic people (but do include plenty of parents, researchers, doctors, teachers, and staff people).  And I’m used to us being excluded from the story when one of us is hurt, abused, or murdered.  Heck, we’ll hear how hard it is to take care of an autistic person, but we won’t hear how this type of thing makes autistic people feel.  Or what we might want done about it.  We don’t matter.  We’re just crazy people without emotions.  Ya, right.

Apparently older people are in the same category, particularly if they have dementia.  Get a diagnosis like that and you can’t possibly know if you’re being taken care of or not, right?  Uh, no.  You can.  Surely there was at least one person in one assisted living facility somewhere in the United States who had an opinion on their living situation that was worth hearing.  Maybe they like it.  Maybe they hate it.  I don’t know.  I didn’t get to hear them.

I’m sick of the people affected being ignored when this type of thing happens.  Yes, I’m used to it too.  But that doesn’t mean we should be silent.  Shame on you, Frontline!  There was a story there.  But you missed the most important people in that story.

Gaps in the ADA

Courtesy of the Durango Herald, we know about the plight of a disabled visitor to Durango, Colorado (USA). It highlights one of many gaps in the Americans with Disabilities Act, and shows how different lobbyists ensured loopholes existed in the ADA.

(note that the ADA is a USA law, so what I say here doesn’t apply to other countries)

In the story, you hear that taxi services aren’t required to be accessible (and some pretty disgusting comments from the owner of Durango Transportation, who notes “special needs require special services” after, in the article, explaining that a person using a wheelchair would pay $72 from his company to get to to town from the airport (an able-bodied person would pay $25). It should be noted that an advocate in the town said there was a different side to this and that local transportation companies were unwilling to provide any assistance. Another transportation company, Animas Transportation after mentioning an $85,000 cost for a van with a lift, said, “The additional costs of the liability insurance will make ‘your eyes water’.” which is yet another stereotype of the disabled that typically isn’t based in fact: that we’re a liability and safety risk (perception of higher liability insurance cost is also not a valid reason for discrimination under the ADA – that’s been fought in court).

I’ll note that the ADA prohibits the surcharge as described above, and it certainly does apply to Taxi companies. And while taxi companies are not required to purchase accessible automobiles (sedans), all other new vehicles purchased must be accessible (this link also talks about surcharges being prohibited). Big surprise, though: a business (or two!) that doesn’t think the ADA applies to them. It’s also interesting that transportation businesses aren’t expected to make their transportation accessible in many cases (buy used vehicles or stick to just buying sedans), but another business who isn’t a transportation company, such as a hotel, is required to be fully accessible if they provide a shuttle service. I have a hard time believing that a hotel faces less of a financial hardship to equip their shuttle van with appropriate lifts (or providing equivalent service) but a taxi company is unable to do the same – particularly since these same taxi companies may be contracted by private businesses to operate shuttle services (so you would think it would make good financial sense, if you want private contracts, to have at least one accessible vehicle!).

As an aside, kudos should go to Doubletree Hotels for having an accessible shuttle (as required by the ADA for a hotel shuttle – unlike taxis, hotels don’t get any exceptions for accessibility in their shuttle service) – apparently the only one in Durango. Unfortunately the man wasn’t going to the Doubletree. But it’s nice to see Doubletree is willing to sell their product to both non-disabled and disabled people, and comply with the law, since sadly many businesses are not. It should also be noted that the Durango and Silverton Narrow Gauge Railway managed to make their historical steam-driven train and facilities accessible, something that taxi services can’t manage to do.

Just what isn’t covered by the ADA, as far as public access? It turns out a lot. But we start with the two main categories of exceptions from Title III:

  • Private Clubs (basically anyone who can also exclude someone on the basis of race)
  • Religious Organizations

For physical accessibility, however, there are additional exceptions (this is in addition to the numerous exceptions in the design standards that say things like a toll road can build completely physically inaccessible tollbooths and then, because now a wheelchair user can’t access them, not hire people who use a wheelchair even if the user could otherwise do the job well):

  • Taxi service automobiles (sedans, not vans)
  • Houses (builders can build a 5,000 house subdivision without making even one house in the subdivision accessible, unless they have a sales office in a model home, in which case that one home must be at least partially physically accessible)
  • Air and rail transportation (these are covered by other laws)
  • Anything a State historical society decides couldn’t be modified
  • Apartment buildings in most cases
  • Homeowners associations in most cases
  • Most multi-story office buildings with less than 3,000 square feet per floor (physical access to space is not required)

I’ll also note there are many other exceptions, such as movie theater captioning (they don’t have to do that).

The ADA is a good law (and does apply to the Durango taxi services!), but it’s still has gaps that we need to continue to work to close. We aren’t done yet.

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.