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.

As Long as Nobody Complains

One way to figure out your social standing is to ask, “What does it take to take away one of my rights?”  The less it takes, the less your standing.

For instance, if you’re a bargain shopper camping in your tent (on public property) outside a Best Buy store on Thanksgiving, you’re pretty much going to get left alone by police and others.  Yet if you are homeless doing the same thing, you’re probably a lot more likely to get pestered, fined, or arrested.  Money has rights that lack of money doesn’t.  The identical actions, but for different reasons (gluttony is okay, poverty is not) result in completely different reactions that reflect the power imbalance of the people involved.  Clearly the homeless guy has less status than the bargain shopper.

In the autism world, and other places, the standard is often, “So long as someone with higher social status doesn’t complaint, you can do X.”  We see this often with service dogs.  So long as nobody complains about the presence of the dog, it’s allowed.  But even one person having a problem with the dog, for legitimate or illegitimate reasons, will often result in the dog getting banned.  Simply put, the rights of the person complaining (even if their complaint is baseless) are more important than the rights of the autistic.  The autistic is to be included, but only so far as it doesn’t cause anyone to get uncomfortable or annoyed.

It also comes up when an autistic child is mainstreamed.  Too frequently the complaint from parents of non-autistic kids is, “The autistic kid is distracting and limiting my kids’ ability to learn. He should be in a special school.”  In other words, my kid’s right to learn in this classroom is more important than your kid’s.  Sometimes multiple parents do this, but even one parent raising the complaint is often enough to cause significant problems for the autistic kid and his family.  Interestingly, however, this is never said about non-autistic kids – even non-autistic kids with a significant history of bullying, and thus distracting and limiting the ability of other kids (including, sadly, often kids with disabilities).  It’s a very rare school that responds to that type of complaint from a parent about a kid, and it’s almost never an option to remove the bully and place him in a special school!  Isn’t that interesting?

IEPs end up written this way, as do rules adults are supposed to follow when they need support.  “You can participate.  As long as it doesn’t bother anyone else.”  You don’t have the right to inclusion, since you’re different.  The others are merely tolerating your presence, a privilege you’re getting (so be sure to be thankful!) that they can revoke at a whim.  I’ll give a hint – that’s hardly inclusion.

The “as long as nobody complains” standard is used by a morally weak person who is already biased – it’s a misguided way to avoid controversy and avoid telling someone, “No, I’m not going to make this place accessible for you and/or your kid.”  It could be rephrased as, “As long as there is unanimous acceptance of the person, he can participate.”  Every other person however has veto power, and a person’s rights are continually at risk of being lost.  That’s a pretty powerless position, rife for bullying and abuse.  It’s about time that we either apply this standard to everyone or figure out a better standard.

Thanksgiving, Star Trek, Abuse, and Miracles

For people in the US, Happy Thanksgiving!

I’m thankful for…

  • My freedom
  • My wife
  • My survival
  • My friends
  • Star Trek
Let me explain.

Sometimes life is hard.  But just surviving those hard times makes me thankful.  I’m thankful that when I tried to take my life as a child, I failed.  I’m thankful for all the stupid little things that kept me alive in the midst of abuse.  I’m thankful that these things gave me a reason to wait just another day or even hour.  I’m very thankful.

I spent much of my childhood terrified that I was going to be killed by classmates (there are a few instances where I think it was but for a miracle that they didn’t).  Much of it was without friends, only tormenters.  I remember almost feeling like I was looking at myself from the outside, being burned, punched, spit on, urinated upon, and things even worse than this.  I remember the humiliation of it all, and it still hurts – 20 or even 25 years later.  I remember being locked in seclusion for two weeks straight while at school because I told the truth (I didn’t do it.  Really.).  I remember running for my life, running to a teacher, where I was laughed at and told to be a man.  I remember other abuse, and the shame that comes with it.  I wanted to disappear most of the time, even as I was crushed under the loneliness of my life.

I know that others can relate.  Others have stories even more horrifying, although I would never try to compare one form of hopelessness, humiliation, and shame with someone else’s.  In the end it takes a miracle to make it through it.

My miracle came in many forms.  It was often something very small, something that just gave me a reason to make it through one more day or maybe just one more hour.  I mentioned I’m thankful for Star Trek.  Sometimes just wanting to watch the next episode of The Next Generation was enough to give me a reason – something I desperately wanted at the same time I desperately wanted to die – to hold off, at least for a little bit.  There were plenty of other things – maybe I told someone I’d help them with something.  Maybe my cat curled up in my lap.  Maybe I wanted to finish the chapter of the book. These might seem like small things, but they aren’t.  They were life and death.  They gave me just enough reason to hold off.

I am thankful to God for putting those things in my life.  Star Trek wasn’t made to save my life.  It was made to sell advertising for a bunch of products that people didn’t know they needed.  Yet somehow that was sufficient when I needed it, as were the hundreds of other things used to give me just enough hope or just enough reason to wait it out.

I’m so very glad I waited it out.  It’s not because of any strength of character or supernatural ability.  It was stupid little things.  No, that’s not right – it was because of the miracles that God put in my life to turn my focus away from the horrors of my reality, for just a little bit.

I’m thankful that this is no longer my reality, and I’m thankful for this in my autistic friends who also somehow made it through childhood.  My life is a good life today.  I have a wonderful wife.  I live in a nice town, a full day’s drive from the hell hole of my childhood.  I have a great job.  Nobody has tried to urinate on me, burn me, rape me, or assault me for the last 17 years – about half my life now.  I don’t feel that shame or humiliation that was so incredibly horrible and hopeless.  Things did get better, from the minute I left my hometown at 4:00 AM on the first day I could (that is, the first day that the dorms opened at my university at 8:00 AM, a 4 hour drive away from home).  I’ve been able to come to peace with my childhood – recognizing the horrors that no innocent child should ever know, while also recognizing it’s affect – good and bad – on my character and who I am today.  I’m thankful for the empathy it has given me.

So things did get better for me.  But, still, I’m most thankful for those times when I was 8, 9, 12, 14, 16 or whatever when the only thing that I could see that was worth staying alive for was the next episode of Star Trek.  Perhaps our perseverations aren’t merely deficits or disordered.  Perhaps they are survival.

Along with my prayers of thanksgiving this holiday will be prayers for those who feel they don’t have hope or must endure another day of abuse on this holiday.  I’m praying for miracles.  If that’s you, please find something – ANYTHING – that can get you through this day.  It’s okay if it seems stupid or small.  It’s not if it gets you through another day.  Don’t worry about tomorrow if that’s too much – focus on just getting through the here and now.  I don’t know what you’re going through, and I can’t pretend I know how much pain you’re in.  I just know that I endured a lot of pain, a lot of abuse, a lot of hopelessness, and I’m glad today that I made it through.  I’m glad you somehow have made it this far, against all odds.  And I’m thankful for that miracle too, even while I pray and hope for your next miracle.

Hints for Allies of “T” People

It’s the Transgender Day of Remembrance, which I wrote about the other day.  I thought I’d share “Joel’s Helpful Hints to Keep From embarrassing Yourself” for non-trans people.

First, a disclaimer.  I’m not trans.  And I didn’t ask any trans person to review this, so it may be full of you know what.  So take this with a grain of salt and defer to actual trans people when they disagree with me!

A lot of people want to do the right thing, they want to show acceptance of others.  But, just like in the autistic community, there’s some things that people do to do that demonstrate a lack of awareness of things important to trans people.  So I’ll give some hints as (hopefully) an ally.  I’m going to assume you’re not a blatant bigot and that you want to be a decent person, so I’m not going to explain why terms like “it”, “shemale”, “tranny”, etc, are offensive.  If you don’t get that, do some Googling and come back when you figure it out.

1. Don’t assume all trans people feel the same way about terms, gender, or anything else.  Gender identity is a key part of all of our identities (including non-trans people), which means there’s deeply held ideas, concepts, and identities that may vary between people.  Some trans people, for instance, hate the word “transgender” used as an umbrella term that includes “transsexual” (they might ask – are they trans-sex or trans-gender, as sex and gender are different, see the next point; defer to an individual before making assumptions).  I use the term “trans” in this post because of this but others use different terms, and it’s ALWAYS the right thing to defer to someone else’s terms when referring to them.

2. Sex and gender aren’t the same.  Gender is not the polite way of referring to a person’s sex, nor is sex a dirty word!  Sex is biology, gender is identity and/or expression.  Some people use the terms male/female to refer to sex, and man/woman to refer to gender.  Others might use different conventions.  There’s a variety of conventions for people that don’t fit the binary in either category.

3. There’s no one set of right pronouns for everyone.  For instance, don’t use ze (or variants) to refer to a trans person unless you know that is that person’s preferred pronoun.  Many trans people believe they do fit the binary system, just not in the way that they were assigned at birth.  It’s insulting to them to put them in a different category (not “he” or “she”, but a third or fourth or fifth category), particularly because of the pain many have experienced of being placed in the wrong category.  Of course I’m talking about people that don’t expressly identify as not either “he” or “she” – if someone doesn’t identify as “he” or “she”, listen to them.

4. If you get someone’s pronouns wrong, or otherwise misgender them, and are corrected, accept the correction and say you are sorry.  Don’t ever try justifying your mistake – things like, “it’s hard to tell” or imply that it’s an easy mistake.  Just apologize and say you are sorry, the move on.  But make sure to use the right pronouns going forward!  If you don’t know what pronouns to use (in other words, aren’t 100% sure), try using the person’s name.  You won’t go wrong there.  And if you want extra points as an ally, correct others when they get it wrong (you’ll lose points and demonstrate you’re not an ally when you don’t speak up).

5. Don’t ever disclose for someone else.  If you’re asked to tell people by the trans person, feel free to do so in the way you were asked.  Otherwise, keep your mouth shut.  This is not a topic to gossip about.  And, no, you don’t come across as “more accepting” or “more progressive” because you talk about your trans friends, outing them in the process.  When you tell someone about your friend, it’s not important to say that he’s trans.

6. No, you really don’t have any business talking about their genitals, asking about their genitals, trying to figure out what genitals they have, expressing curiosity about their surgical status, etc.  This is even true if you think you’re asking it in a disguised way, trying to watch what bathroom or shower they use, talk about how you don’t understand why someone who is a (insert gender here) would want to have sex with someone who had a (insert genital description here).  Yes, people do ask that kind of stuff.  But it’s not your business.  If they feel you are someone who should know, they’ll tell you.  Otherwise you don’t need to know.  If most people asked or talked about my genitals, it would be considered rude and creepy.  That wouldn’t change if I was trans.  Don’t be rude and creepy.

7. Not everyone considers “trans” to be permanent.  Many people that once identified as trans no longer do, feeling that they have transitioned to their new gender.  Once transitioned, they are simply a man or woman.  They aren’t a different category of trans.  Others keep the identity.  Respect people’s choices.

8. Most trans people that identify as a man or woman want to be seen as a man or a woman, not a TRANSman or TRANSwoman.  There are lots of people brave enough, or required because of circumstances, to publicly acknowledge that their birth gender assignment doesn’t match who they are.  But it’s still respectful to treat them like any other man or woman.  And that goes double for someone who doesn’t want to be seen as something other than a man or woman.  So treat them as a man or woman (obviously I’m talking about people who identify in the binary here, not people who don’t).  Likewise, it’s not important to always distinguish yourself from trans people – don’t constantly refer to yourself as a non-trans/cisman/ciswoman/cismale/cisfemale or similar when the situation doesn’t warrant it – all that does is reinforce the difference (certainly there are times to disclose you aren’t trans, such as when you are speaking as an ally and it’s important to let people know that actual trans people’s views are more important – but using this terminology in other settings can make people feel they either have to lie or disclose something about themselves that they don’t want to disclose – that they aren’t cis-whatever).

9. A trans person may be “out” as their true gender in some situations without being out in others.  If the person is using a different name and pronouns in a different setting then when you met them, they may have an important reason to use that name and set of pronouns.  Respect that.  Their livelihood, family, or other things may depend upon it.

10. Trans people are more than gender identities and genitals.  While many are very interested in talking about gender and their own experiences, everyone likes to be seen as a whole person!

11. No, having some masculine or feminine traits that don’t fit your gender does not make you trans!  It’s about identity – nobody is perfectly masculine or feminine.  If you are trans, feel free to relate.  But if you are not trans – even if you have some non-typical traits – that doesn’t mean you have had the same experience.  Your experience is valuable, but it’s not the same and can’t be directly compared.

12. On stereotypes: there’s more to transwomen than beautiful models.  And more to transguys than muscular hunks.  Non-trans women don’t need to wear dresses and extravagant hairdo.  They don’t need to avoid “man” hobbies like restoring cars.  They can be a woman who likes to get her hands dirty.  So can transwomen.  Too often, only ultra-stereotypical trans people are shown on TV and the media.  Not every trans person could pass as a model (for women) or hunk (for men), nor should they have to.  Nor do you have to go out of your way to tell a transwoman she’s beautiful or a transman he’s masculine.  If it would sound funny saying “you’re a beautiful wonderful princess beauty pageant model” to a non-trans person, it still sounds weird when you say it to a trans person, even if you think it makes you look accepting and progressive!  It’s fine to compliment people, certainly.  But you don’t need to overdo it to show you see them as a woman or a man.

13. Being “supportive” by saying “I see you as a woman” or “I see you as a man” might be a bit (or a lot) insulting to some people.  Nobody tells non-trans people these things!  They don’t have to.  They just treat non-trans people according to their gender.  Actions speak much louder than words in this case.  “I see you as a woman” can be rephrased to “I see you as ALMOST a woman.”  Wouldn’t it be better just to treat that person as a woman?

14. Not every non-trans person is straight.  Nor is every trans person straight.  If a transwoman (that is, a woman that wasn’t fortunate enough to have been assigned female at birth) is attracted to women, she’s like any other woman attracted to women: she’s a lesbian.  Likewise for transmen attracted to men – he’s gay.  Insulting follow-up questions to this are anything along the lines of “if you’re attracted to women, why did you feel you needed to transition” or “but a man has better parts for sex with women” or anything similar.  If you wouldn’t tell most lesbians or gay guys that, you shouldn’t tell a lesbian or gay guy that happens to be trans that, either.  Finally, if a transwoman is attracted to men, she’s straight.  And a transman attracted to women is straight.  You don’t have to be gay to be trans (but you can be)!

15. Speaking of sex – unless you are in an intimate relationship with a trans person, generally it’s not considered polite to ask how that person has sex.  Once again, if you wouldn’t ask a non-trans person that question, you shouldn’t ask the trans person that question.  Nor the related questions of “how are you going to have a kid” if the person says they want to have a child – once again, that’s personal and generally invasive (and, frankly, probably doesn’t need to be asked if you actually have a reason to need to know – you’ll already know).

16. If you’re curious about surgeries, gender identity expression, or other general transgender topics, how trans people have sex, or any number of other things, there’s this wonderful thing called the internet.  I assure you it is on the internet somewhere.  You can find out without embarrassing yourself by insulting someone!

17. Once again, actual trans people override any of the above thoughts of mine.  Defer to them.  Always.  Using “correct” language to refer to someone while ignoring what someone tells you is pretty much exactly the opposite of respect.

It’s not a big deal.  If you treat people like they want to be treated, accept that you might be wrong, and leave your need to be seen as a progressive or understanding or accepting person behind, you’ll do fine.

Transgender Day of Remembrance

Sometimes, as a member of one minority group (in my case, autistics), it’s easy to forget about others.  It’s easy to think that your own group faces the worst suffering or abuse.  Suffering and abuse isn’t like that – there’s a lot of horror in the world.

I believe in justice for all, not just my people (autistics).  So I want to highlight something that is happening this week.

It is not possible to be in favor of justice for some people and not be in favor of justice for all people.
– Martin Luther King, Jr.

Tuesday, Nov 20th, is Transgender Day of Remembrance.  It’s an annual event where people take a few minutes out of their day and remember that people have been killed for living authentic lives as the gender that they are rather than the gender that some would have them live.

One way you can show support for people is to attend a public remembrance event.  See http://www.transgenderdor.org/ to find one near you.  I’ll warn you that it’s very difficult to listen to the names of the dead without realizing that someone’s brother, sister, dad, mom, son, daughter, friend, wife, or husband is forever gone.  You can help those who know someone who died, and those who have been hurt by others, by showing your support for them.  You don’t need to know a trans person or be a trans person.  Just being there will show love and support.

Trans people don’t just face the threat of death (at a far higher rate than others in the LGBT community), but also face injustice in many other areas.  A heartbreaking read is Injustice at Every Turn, a report on the state of discrimination against trans people in the US.  There are a bunch of horrible statistics there.  For instance, nearly 1 in 5 (19%) of trans people say they were denied medical care because they were transgender.  Imagine for a minute having your doctor say “I can’t treat people like you,” simply because of a medically irrelevant characteristic and a wrongheaded view of morals (hint: medical needs should take priority over your religious hangups; if you can’t do that, the medical field is the wrong field for you).

I’m praying for a day when people are allowed to be who they are without fear of attack or discrimination.  Until then, I’ll speak out when I see injustice.  I hope you will too.  The worst thing we can do as allies, short of actually attacking another person, is to enable that attack by remaining silent.

As Martin Luther King, Jr. also said:

History will have to record that the greatest tragedy of this period of social transition was not the strident clamor of the bad people, but the appalling silence of the good people.