Emotional Age and Maturity

This week’s horrible article by Temple Grandin’s mother contained a lot of unfounded and unsupported assumptions.  I’ve written about the assumptions around connecting late sexual experience with child porn, but there’s another damaging assumption in the article that is worth talking about on it’s own – the concept of emotional age or emotional delay.

People who haven’t studied autistic emotions (either formally or informally) often come to the conclusion, “Autistic people’s emotional development is years behind the development of peers.”  Actually, they usually phrase it as “Children with autism develop emotionally at a slower rate than their peers,” but I’m not going to get into the autistic vs person with autism debate now (others have already explained it).

Essentially, the idea is that a 20 year old autistic might have the emotional development of a 10 year old (or a different age – most advocates of this theory are quick to point out there are differences among autistics) and mature much later than their peers emotionally.

There’s a problem, though: autism is not “persistent childhood syndrome.”  Autism isn’t about developing slower.  It’s about developing differently.  Not different in speed, but at a more base level – different in order of development, different in outcome of development, and different in distribution of strengths and weaknesses.

Before we can talk about those things, we need to talk about other parts of autism.  Autism also involves how we communicate with the world.  An autistic person might, for instance, have significant trouble explaining what they are feeling or what an emotion is like.  That doesn’t mean they have underdeveloped emotions, but simply that they can’t express it.  Emotional language is difficult for a lot of autistic people (myself included), although usually not in the ways people think.  That said, differences in nature, strengths, and weaknesses of communication make people think we have emotional differences that we don’t have.  For instance, how do you show love?  There’s a ton of ways to show someone you love them – anything from saying, “I love you,” to action, whether it’s a hug or whether it’s doing something inconvenient for yourself that you know the other person will enjoy.  It’s not all the same!  But if someone tends to use a form of love expression that differs from what another person might expect, it gets interpreted as “this person doesn’t love me.”  This is true for NTs (neurotypicals) as well as autistics (a lot of relationship counseling of NTs seems to revolve around how to show love for each other), so it only makes sense that autistics might express in ways that baffle or confuse a lot of NTs.  But there’s a difference between baffling expression and lack of the emotion.

That’s not the only difference – another difference is in how we perceive the environment and our base stress levels.  Being in some environments, or being in a situation where you’re under tremendous stress, changes how you interact with people.  For instance, see this presumably non-autistic politician calmly discussing pension reform:

Now maybe the politician in the video is emotionally immature.  But maybe he’s not.  Maybe he’s just stressed and frustrated and lost control of the moment.  This happens to us all (I’m not going to comment on the maturity of the woman behind him responding by laughing – she also is presumably non-autistic) in situations where we are sufficiently provoked or stressed.   Now, imagine that you’re in a lot of pain, under a lot of stress, maybe bullied at school constantly.  Might you not lose your temper and display emotional “immaturity” more often?  Is it really emotional immaturity?  Are you handling your emotions well (considering other things you might do, maybe you are – maybe this is what gave you an outlet for your emotions other than suicide).

But, if an autistic has a meltdown, or can’t handle the current situation, rarely is the focus on her situation.  No, she needs to “learn how to handle her emotions.”  She needs to mature.  Never mind that she might be in pain because of the light and sound around her, that she can’t explain something that’s bothering her due to communication differences, and that others are treating her poorly.  No, she’s at fault to many people.  She’s supposedly immature.

So, now that we know some things that don’t point to lack of emotional maturity, what do we know about autistic emotions?

First, we know that autistic people have trouble expressing emotions – as hinted to above – in ways that NTs find acceptable.  Certainly many people, NT and autistic, can improve how they express emotions.  But it’s not typically seen as lack of emotional development (except by armchair psychologists) in NTs when an NT has trouble with this.  It’s seen as someone who has trouble controlling their emotions, not as someone who is a decade younger inside.  There are studies on this (too often, when talking about something like this, you’ll hear “we need to study autistic people’s emotions.”  I hate to tell this to some people, but we do!).

One of our most common reactions to intense emotion is to basically “hold it in” or suppress our emotions to deal with stress, fear, or uncertainty.  I know people who have seen autistics seemingly “fly off the handle” with no real provocation (that they recognized – in other words, that they had empathy for) will disagree with me, but research says otherwise.  It says that we actually do this a lot, more than neurotypicals.  And that we use less of the neurotypical reappraisal, which can be seen as reanalyzing a situation – did the person try to hurt us, or is there another explanation?  Obviously both strategies have their place (and autistics do both), but autistic people tend to do the suppression more than neurotypicals do.  This isn’t something that leads people towards child porn or causes them to be like children when they are adults (these are both aspects of the horrible Daily Beast article).  Instead, this deals with how we respond to emotions, not what emotions and desires we have.

That gets to the second point – we have the same emotions, but may feel them more intensely.  That makes sense, since it’s well known that we feel other things (like sound or light, for instance) often in more intense ways.  This research has shown that autistic people do have empathy.  Not only do we have it, but we feel it deeper and stronger than neurotypicals in many cases.  Maybe that’s why so many autistic adults are involved in social causes that are largely ignored by the general population (I can name 10 autistic adults I know that are involved in immigration social causes, but I can’t even name one non-autistic adult I know that is – and I know more non-autistic adults than autistic adults).

High empathy doesn’t lead someone towards sex crimes or child porn, nor is high empathy associated with stunted or delayed development.  In fact, high empathy would give someone even more reason – assuming that they didn’t have enough in them already – to avoid child porn and other sex crime.  Couple that with the staggering statistics on sexual abuse of autistic children (in my experience, most of us have been abused as children, and research seems to back me up), and it’s easy to see that, combined with empathy, the vast majority of us would not be drawn to child porn.  We know what it’s like to be the abused child (I’ll also add, to bolster things I’ve already said, that we’ve already learned about children and sex through our abuse, and have no need to learn about sex that way as adults – we were the victims of that already – even if Temple’s mom disagrees).

We also have the other emotions and attractions.  Including sexual attraction.  One thing that is more common among autistic people is homosexuality and other non-heterosexual sexualities.  Research supports this.  However, what research doesn’t support is a link to child pornography.  There are anecdotes and some academic writings similar to the Daily Beast article, but they are generally case studies and hypothesis, and thus not able to be used to draw broad conclusions.  Nobody debates the existence of sexual predators and child porn viewers among autistic people – the question is whether or not there is a link to autism (just because an autistic person does something doesn’t mean autism was a contributing factor).  In the accounts I’ve read of autistic child porn viewers, all of them had one other element: either the person was in an adult relationship (in many cases, married) where presumably adult, age-appropriate sexual activity occurred, or the person had otherwise expressed a sexual interest in adults.  In addition, in most, the person also assaulted or harassed adults.  I say this to confront Temple’s mom’s unsupported hypothesis that autistics, being emotionally undeveloped and thus like children emotionally, seek out images of children.  Clearly even in the academic case studies of autistic adults who view child porn, there’s not a lack of interest in adults – those emotions and attractions are definitely there.  We’re not talking emotional development delay – we’re talking someone who places their self-gratification and unusual desires above society’s rules and other people’s welfare.  That’s not “being childlike.”  It’s being criminal, something autistics and non-autistics both manage to do (ironically we don’t blame a desire to be part of a group facilitating some criminal activity, like some gang activity, on the neurology of the person doing it unless they are non-neurotypical – even though the desire to fit in is important and common for people who have neurotypicality).

Another factor involved with autistic emotion is the social acceptability of expressing our emotions.  Here, I’ll stray a little from research recognizing that personal experience is not something we can draw firm conclusions from (so if you want to criticize something here, THIS is the personal experience part!).  One of the tactics of bullies in my childhood was to provoke me to “tattle” or have an “outburst.”  The bullies were skillful – they knew how to manipulate the situation so that the teacher or authority would see Joel seemingly overreacting, without seeing all the background for why Joel reacted the way he did.  So, for instance, they might tease me all day when the teacher isn’t looking or watching, but when I’ve finally had enough and blow up, the teacher just sees me yelling and screaming at the bullies.  When asked, “Why?” I likely can’t respond coherently or calmly, or I say, “He’s teasing me” to which the teacher thinks, “That reaction is WAY beyond how he should have reacted to being called a name once” (and it would be, if it was once).  So, now, I’m emotionally immature (ironically, the bullies who exploit this are not).

We do experience emotions differently and deeply.  Adults aren’t children, even if the adults have emotional differences.  It might sound good to think of an adult as a child as why the person would be sexually attracted to kids, but that’s not supported by studies of pedophiles (a group that has been extensively studied).  Yes, there are autistic criminals, pedophiles, and child porn viewers.  We’re not all saints, and there are some pretty horrible people among us – just as there is with the rest of the population.  We’re not unique and free from the sins of humanity.  But we’re also not more likely to sin, nor more likely to “act like children emotionally.”  We will act differently than neurotypical adults, that’s for sure.  And there’s a wide variety of difference, but none of that is like a neurotypical child.

Part of fixing the problem of poor sexual education among autistic people involves us treating people as they are, not as we think they are or want to see them.  That’s where this scares me the most – if you think a 20 year old is emotionally a 10 year old, what did you think of them as at 10 years old?  Certainly not a 10 year old.  So, if they were like a 5 year old then, you probably don’t need to think of them as soon-to-begin puberty.  So you get to put off that sex talk that you might give a neurotypical (although, unlike what Temple’s mom says, most people put off that talk for neurotypicals too – they just don’t have the justification; dads are not generally teaching kids about sex, nor are moms – so don’t blame the absent dad for this, as the present dad and the present mom don’t do it either).  But the reason for this talk isn’t to keep your child from becoming a predator as much as to keep him from becoming a victim and to help him as he grows develop the type of relationships that are positive and affirming of everyone involved.  That’s something everyone needs.

A Rule to Avoid Being a Creep

Autistic people like clear definitions and rules. Some things don’t have good rules.

One thing that doesn’t lend itself to creating fixed rules is any type of relationship – whether a friendship, a romance, a one-night-stand, or whatever other type of relationship. People are messy. We’re complex.

But, it’s pretty simple to not be a creep.

First let me tell you what doesn’t make someone a creep: sexual attraction. Even if that sexual attraction isn’t mutually felt by the object of your attraction.

That said, there are a couple parts of sexual attraction, and it’s sometimes useful to separate them out, as they are felt differently in different people. First, there’s the “WOW! She’s VERY attractive!” type of attraction that isn’t based on a relationship. Typically, acting on this is a bad idea – chances are, if it’s a random person walking down the street, that other person has practically nothing in common with you. She might be gay (and you aren’t a woman). Or want to marry someone who can share her love of sailing (and you hate water). Or might not see you as attractive. Or might have completely different life goals than you. Or might not want the same depth of a relationship as you want (she might want a one-night-stand while you want a marriage, for instance). Or any number of other things that would disqualify you as a potential partner in her eyes.

So, acting on phase one of the attraction generally isn’t going to be successful. Of course movies are sometimes based on phase one attraction working to build relationships. Perhaps that’s why they are entertaining and interesting. But movies aren’t real life. And, yes, I know in real life there are sometimes people for whom phase one attraction was the only reason they met and things have worked out mutually well. That’s fine too, but it’s not the typical circumstance.

Phase two attraction is a bit different – it’s not just based on looks, but rather it’s something that develops as you get to know a person. This doesn’t mean that phase one isn’t there (someone can be both attractive initially and attractive after you get to know them!), but it is in addition. I think a lot of long-term partners would describe this as making their love life better – the combination of phase one and phase two can be very powerful and exciting (far more than phase one alone for many people). Perhaps this is why 1/3 of men seeking prostitutes seem to desire an emotional relationship with the prostitute – they are looking for that phase two combined with feelings of mutuality. The emotional attraction that comes with phase two is not separate from the sexual attraction – it actually creates a powerful sexual attraction. In many people it is even deeper than the phase one sexual attraction.

This phase two attraction is a bit different. As you get to know people – and sometimes this can happen surprisingly quickly – a mutual emotional connection might be formed, which increases the sexual desire of both. I’d encourage people to look more for this than the phase one attraction, while not denying the existence of either.

So, that’s my thoughts on general principles. Back to the rule. We’ve already said that sexual attraction doesn’t make someone a creep.

What makes someone a creep is simple: Creeps don’t care if there is mutual agreement about how to proceed in a relationship. If it doesn’t exist, they think they can create it – and try to do so. It’s an emotional, psychological, and sometimes physical violation.

That’s where you can get in trouble with the phase one sexual attraction. It’s almost certainly not mutually felt. The phase two attraction might develop as you and the other person get to know each other, but there’s probably more chance it won’t. Just randomly acting on “She’s pretty, I want to get her in bed,” is likely to meet with failure after failure. That getting to know her thing – even if it doesn’t make good movies – is important.

And, then, as you get to know someone, you don’t proceed without mutual agreement. Occasionally you might “test the water” and see if the other person wants to go a bit further in the relationship, but, if not, you have one thing to do if you don’t want to be a creep: listen. If she sees you test the water, and then gently lets you down, respect that and enjoy what you have with her – friendship or whatever else. Don’t try to figure out what different tactic you can try. She knows you’re interested, she’ll initiate if she changes her mind (she probably won’t). And, yes, even in western society women can and do test the water too. So listen for that too.

Of course I can see people asking, how do you test the water? I can’t tell you that. Each relationship is different. There is no formula, no matter what the pickup artists out there may tell you. Everyone is different. Just respect her if she says she’s not interested. Don’t try a different tactic, respect her. And if you keep persisting, and thus become a creep, don’t be surprised when she gets a little more forceful in rebuking you. She’s not a bitch, nasty, or whatever else. You were a creep.

If you allow her to think you are happy having a friendship, while really you want her in bed, and you won’t be happy with it remaining a friendship without sex, you’re also being a creep. You don’t have mutual agreement about the relationship. She’s thinking, “Oh, a friend! That’s cool.” You’re thinking, “How much longer do I have to put up with pretending to be a friend before I can get her in bed?” You’re not in agreement. You’re setting her up and trying to deceive her to get what you want.

It’s risky to say what you want. And if what you want is good for you but not good for her, she’ll probably turn her down if you allow her to do so (not allowing this would also be creepy). But part of coming to an agreement on a relationship is to communicate and understand where the relationship is at. For me, I can’t do that the way neurotypicals do. The slight and subtle hints and body language doesn’t work. So I need to try to be honest. But there are few things harder in the world than being honest and vulnerable. So I think autistic relationships – particularly between two autistic people, but also likely between an autistic person and a particularly understanding non-autistic, can look a bit different. Some things might need to be more explicit. A challenge is trying to make those things clear while not destroying the mystery and spontaneity of a relationship. It takes someone who understands.

I wrote this mainly from the perspective of a man looking for a woman, but it applies in all sorts of other relationships too. Two people might agree to have quick sex without an emotional connection – or three people might want to do something sexual together. That might be unusual, but it’s not creepy so long as you mutually agree on where and what the relationship should be. And you can be a creep without even seeking sex but seeking whatever else instead. Forcing a friendship to progress can be creepy just as trying to get the girl in bed can be.

So, don’t be a creep. Respect and mutuality.

Why Self-deprecation is Ugly

Autistic people sometimes live a life where they are never good enough in the eyes of people important to them. Perhaps not “good enough” in the eyes of a parent, friends, classmates, or someone else’s eyes.

One response is to internalize this feeling of inadequacy. You believe yourself to be inadequate. So you express that. I understand that, I lived through it.

This is horrible for a person to feel. And sometimes there aren’t a lot of good ways to deal with this miserable life. You may discover self-deprecation. If you’re going to fail in other people’s eyes, you might as well be the person to say you’re inadequate – and beat anyone else to, getting a little bit of control. You can’t succeed, but you can take the words from others.

Of course this is not a positive thing. But understandable.

Where it becomes a problem is when it continues when the person can succeed. It then becomes not an expression of depression but rather of manipulation.

Yes, manipulation.

Once someone can succeed, the self-deprecation is now a manipulation. It can be used to get people to look at the person, give them attention, and even get others to give compliments.

It sometimes gets seen as humility (sometimes by the person acting in the self-deprecating way, sometimes by others). But it’s not humility. Humility doesn’t seek to gain control, while self-deprecation does. Humility allows someone to succeed and recognize their own success – self-deprecation actually draws attention to the success, by drawing other people into acknowledging the success. Humility doesn’t seek recognition, but self-deprecation attempts to pull out recognition from others. Humility is good. Self-deprecation is not (although sometimes it’s an understandable symptom of depression).

Self-deprecation attempts to control criticism. It seeks to get others to either sympathize with him (and tell him his being, attributes, or work are actually even better than they really are) or to see that he knows what is wrong and really is smart and able, just didn’t quite pull it off this time. Most people, being polite, will appear to sympathize outwardly.

Humility doesn’t control criticism. If someone says your work or attribute or being sucks, you analyze the truth of the statement and move past that. It allows for someone to point out a flaw you don’t know about. It also allows you to dismiss their opinion, if it isn’t well founded. Not all criticism is accurate, after all.

Simultaneously, self-deprecation not only controls criticism, but removes the need to act in it’s presence. You’ve already said it or you suck. So, what does the other person expect? You suck. You know that. You told them! If you suck, how can anyone expect you to do better? You don’t have to act, if you employ this strategy of manipulation.

Again, I think most people that practice this manipulation are doing it because of pain and hurt. They’ve probably had a horrible past. But, at the same time, it’s not always a good way of interacting with others and can become manipulative and ugly.

For myself, it took me quite some time before I could accept that a compliment was not just setting me up for abuse or humiliation. So I’d question a compliment, rather than accept it. Even when I was able to succeed, I’d deprecate. It was a bit of a habit and a bit of coping. But it wasn’t humble. It was still manipulative, even if it was developed as a strategy to cope with depression and horrible life circumstances. I needed to learn what was wrong with the self-deprecation, learn why I did it, and learn that, no, I don’t need to live in that way. I could be good at something. And someone else could tell me so – without me needing to set the stage about how horrible I was first. I could also be non-perfect, without the need to avoid all criticism by getting out in front of someone else’s criticism. I could just accept myself as I am (and recognize legitimate areas of improvement). And I could be wrong. That’s okay too.

When I continued that behavior past the places where I was being abused, and into places where I had plenty of positive feedback from others, it became manipulative. It could easily become ugly – a way to get people to do what I want them to do, while freeing myself from potential criticism. Not good. And it’s okay to not want someone to manipulate you in this way – that’s not abuse, it’s not wrong, and it’s okay to call out this behavior when you see it. It is bad behavior, even if it had a good reason. Just accepting it doesn’t help – it doesn’t help if it truly is a result of ongoing abuse (it instead facilitates the abuse – better to find the cause and get it taken care of!). Nor does it help if those things are long past and this is now just plain manipulation.

I’m definitely learning to live – and that a compliment may be just that. I may have done good! That part of my personality really might be good! And, yes, that criticism may even be valid (or not!). That’s all good. As I learn this, I learn that people’s opinions of me, while worth evaluating, are not what is important. Being as decent of a person as you can is important. Yes, you do need some positive input from other people. And too many autistics don’t get that. But at the same time, once that’s there, it’s freeing to recognize it and then let go of the need that is now met and to give up that manipulation of others.

Just Expressing My Feelings…Let Us Hate Things Together

The comments in an article on Autistic Hoya’s site, “My Heart Breaks for Your Child,” got me thinking about how often people, when called out about awful things that are said about someone simply respond with something like, “I’m just being honest about my feelings.  I can’t help the way I feel.”

Feeling a certain way doesn’t make that thing either true or right.  If I felt that I was in danger when a hispanic family moves in next to me, that doesn’t necessarily mean that I am actually in danger (heck, I might feel safe if a white family moves in next to me, but they might actually be mass murderers).  In this case, racism is racism, even if a person is a sincere racist (really, is there any other kind?).

Maybe people who experience racism prefer people to be up front about their feelings and hope racists tell the world about their racism.  I don’t know.  But even if people prefer this, I can’t imagine that makes them like the racist, nor does it take away the ugly part inside the racist.  Even if the racist is honest and sincere.

The most common way this is expressed in the disability world is a parent (sadly, it’s often a parent) who says, “I wish I didn’t have a disabled child.”  There are two things here that need to be deconstructed a bit:

  1. Most of the time they do have a disabled child.  It is the child they have, and to not want a disabled child is to not want their child.  I can hear the screams of some readers now…”But that’s not what I mean!”  That’s fine.  I can understand that sometimes you might use the wrong words.  Now you know how your words come across, so please choose different ones.  But if you insist that these words aren’t what you mean, but continue using them, don’t expect sympathy from me.
  2. Getting past not wanting a child, what many people mean by this is that they don’t want their child to have the bad things that they associate with disability.  Fair enough – who would want any child to have bad things?  But the problem here is that you’ve confused disability and bad things.  Also, you may consider disability-associated traits from a perspective of a non-disabled person and make assumptions that aren’t actually valid from the perspective of a disabled person.

I’m not going to focus on the first point.  I don’t think most parents saying they don’t want an autistic kid (or a kid with another disability) are talking about the first point.  Generally, I’m not going to question most people on whether or not they want their child – I assume they love and cherish their child, even if they say stupid things.  But, I do ask for more precision in language however, as, sadly, there are parents that are selfish enough to neglect and abuse their disabled children because they – the parents – don’t like the impact of the disability on the parents’ lives.  I hope most parents don’t want to accidentally be grouped into that category!

So I’ll focus on the second part of this.  Your feelings if you are talking about not wanting the bad things associated with disability are an expression of your beliefs.

And it’s these beliefs that concern disabled people – because you’ll be making many, many decisions on the basis of these beliefs.  If your premise is wrong, your conclusion is going to be wrong.

Let me talk about some of the bad things that parents who say they don’t want a disabled kid mean when they say they don’t want them for their kids.

  1. Medical Issues: A child might have severe medical issues, either associated with disability or not.  For instance, a child might have a heart defect that could kill them at a young age (the child doesn’t need to be in the typical categories of disabled to have this, I might add, but that’s not really relevant here – I’ll grant some disabilities make this more likely).  I can’t imagine what it’s like to be worried about your child dying.  I wouldn’t wish that for anyone.  So, yes, I agree, that’s a fine thing to wish your child didn’t deal with.  But focus on the medical problem, not disabilities as a whole.
  2. Social Stigma and Prejudice: A lot of disabled people are badly treated by society.  This, too, is a fine thing to wish your child didn’t have to deal with.  Note however that this isn’t your child’s characteristic.  He is the victim, not the one that needs to change.  When the desire of a heart is that a person not be disabled so they won’t be mistreated, that expresses a subtle prejudice that considers the victim’s treatment inevitable if the disability remains – and inevitability means that it’s not worth trying to change things.  It’s not inevitable.  We can make the world a better place.  You don’t wish a woman who was raped was instead a man, so that she wouldn’t have experienced this horrible crime against her.  You instead wish that all men would treat women decently, that women would see justice when that doesn’t happen, and that society would take the problem seriously.  And your hope might even spur you to action, since there is no hopeless inevitability here.
  3. Loss of Opportunities: It’s also fine to wish a child had an opportunity that would be appropriate to them.  Sometimes we don’t get the chance in life that someone else might get.  This is true for all of us – maybe that company doesn’t ask you in for an interview after receiving your resume, even though you would be a great fit.  Or maybe you don’t meet up with the perfect spouse that is out there, just not where you are.  When the loss of opportunity is related to prejudice, see #2 above – it’s not the disability, it’s the bigot or prejudiced people that are at fault.  But there are two other possibilities too.  First, your child might have dreams that are unfulfilled because your child lacks the ability to fulfill those dreams, even if opportunities were given.  I’ll talk about that in #4.  Second, what I’ll talk about here, is that sometimes the lost opportunity isn’t necessarily something that the child wants.  I’m sure my dad, before I was born, pictured himself playing all sorts of sports with me.  But I’m pretty darn unathletic.  Not only that, I really had no desire to play the sports!  It was his dream, not mine.  And that’s nothing to do with my disability.  So wishing my disability away to solve it is, again, the wrong approach.  It’s his unfulfilled dream, not mine!
  4. Inability to Fulfill Dreams and Desires: I’m not talking about lost opportunities.  I’m talking about the dreams we might have that we simply will never accomplish, no matter how much we might try or how much society changes.  Unfulfilled dreams are, sadly, a part of all of our lives.  Someone might want to play pro football as a kid – but they simply aren’t professional league material.  No matter how hard they try, that dream will be unfulfilled.  For some people, that can be extremely depressing.  Part of the job of the wider community is to help people discover the things that match their aptitude, interests, and personality and provide the opportunities to pursue them, gently guiding people towards these incredible dreams.  It’s important to realize however how many greats were previously told that excelling in their field was impossible for them.  Just because I think someone can’t become a pro football player doesn’t mean I’m right!  But at the same time, how many people get to have the fairy tale life they dreamed of as kids?  Does that mean our lives all suck?
  5. Perceived Loss: I can’t imagine being blind.  I suspect a lot of parents can’t either, even if they have a blind child.  To me, thinking of losing my sight causes feelings of fear.  I think of how sad it would be to not do so many of the things I enjoy.  But, again, much of this is based on my perspective as a sighted person!  If I were to close my eyes (the best I can do to imagine the blind experience) and walk around my house, I’d break things (maybe even parts of myself!).  It would be hard.  I couldn’t get to work.  I don’t know how I would cook or take care of myself.  It would be exceptionally hard emotionally.  But of course that would be as someone with no experience being blind!  Someone who lives daily with being blind learns how to get around their house without breaking things (or themself), learns how to get to work, learns how to take care of themself, learns how to cook, etc.  Maybe some things need to be done differently, or maybe they need help that sighted people generally don’t (outside of rich people who have staff to cook and clean for them, anyway).  Of course maybe they don’t need the help that I, as a sighted person, would think they need!  Telling a blind person, “I wish my child wasn’t blind,” is saying, “My child has lost so much by not being able to see.”  That’s very likely not the blind person’s perspective – particularly if that person has accomplished many of their own dreams!
  6. I don’t want to suffer: Sometimes the parent saying this is, themselves, suffering.  They may lack support.  They may be depressed.  They may not know how they are going to get through another day.  Again, this is a problem the parent is experiencing, and that is where the focus needs to be – to help the parent, not to wish for a magical cure pill for the child.

Now, I know that there are plenty of disabled people who have internalized these messages and think, “If I wasn’t disabled, my life wouldn’t suck.”  They may even be right (although I doubt life would be as rosy as they might imagine).  But I think much of this comes from disability being a convient thing to blame for all the problems of life.   And of course these disabled people are brought out front-and-center every time this debate comes up, to show how my part of the disabled experience is invalid.  But, no, they also do not have the fullness of the disabled experience anymore than I do!  It’s only one element of the whole of disabled experience.

Nor is someone who hates their life and blames it on disability “more disabled” than everyone who loves their life.  Things don’t work that way.  Level of disability, however you categorize it, has nothing to do with happiness.  I think research here would be worthwhile – what makes a disabled person’s life better?  I say that because I see people who can do many things I can’t who hate their lives, and I see many people who can’t do many things I can who enjoy their lives.  It’s not about ability.  It’s about other things – probably the very things that matter to us all like a connection to other people (yes, even “profoundly” disabled children seek that, although it’s not necessarily recognized as what it is), a safe place to be, meeting your basic life needs, and the chance to pursue the achievable dreams.  None of this is helped by a parent expressing feelings that disability is to blame.

I know in my life, it’s pretty simple to figure out what made me happy and what made me depressed.  When I feared for my life from other kids, when I was being abused by other kids, when I experienced the shame and humiliation daily around other kids…well, I probably would have taken a magic cure pill had it been offered.  I hated who I was, after all.  Everyone (including teachers and other adults) told me that if I was someone else, I wouldn’t be experiencing this.  The victim was blamed. My disability was blamed.  I was blamed.  I imagine these people were sincere, though.

Do you know what happened when I left that town one day in the mid 1990s?  Every day – yes, every day – has been better than those days.  Even my worst day in the many years since is better than the days when I was facing that abuse.  I thank God, literally, that I made it and that I somehow retained some of who I am – my essence – through it all.

Now, I’m not saying everyone who hates being disabled does so because of bullying.   That’s not the case.  Nor am I saying my life is all wonderful and that all my problems are solved.  I still have plenty of problems.  I still have sad days.  I still have days that are miserable.  But I’ve experienced good days, wonderful times, and things that make me glad I’m alive.  No, it’s not because I’m less disabled than someone else.  It’s because I’ve had good experience and a full life.

So, when I hear disability blamed for misery, even if it is a sincere belief, I know that belief is hogwash.  It’s not about disability, it’s about other things.  Let’s hate those other things together.

Today, I’m feeling.

A sad yellow smiley face, with big blue eyes and a red frownYes, I’m feeling.  That’s all I know for sure.

I’ve always had a hard time figuring out what I’m feeling, particularly negative emotions.  I remember being shown, in kindergarten and first grade, pictures of smiley faces and frowny faces, and being asked, “What does this picture show?”  I always got “sad” and “angry” wrong.

I don’t know when I learned the difference between angry and sad.  I imagine it was a few years later.  I don’t think it occurred to me that “sad” was different than “angry.”  I knew I didn’t like the way either felt.
A yellow angry face, with eyebrows slanted towards where the nose would be, a black frown, and eyes looking downward

Certainly today I can tell you the difference between angry and sad.  But of course I still misread people, still miss cues, still do the wrong things.  The world is a complicated place.

But right now…well, I don’t know what I’m feeling.  I feel, well, weird.  Not happy.  Not sad.  Not angry.  I don’t know what I feel.  Nothing happened today that seems particularly emotionally significant – it was a decent day that I spent at home with my wife (and three good meals!).  We didn’t spend as much time together as I would like (we both had other tasks that needed to get done), but this isn’t a longing feeling, even if I would have loved if we both had nothing to do but spend the day together.  But, as much as I might want that, that isn’t the feeling I’m talking about.

Sometimes I think I was born without a secret decoding ring.  I had to spend a lot of time learning “Oh, that’s what HUNGRY feels like!”  It took me a while to learn to recognize being tired or overloaded.  And I still get these wrong.

Like I am today.  I don’t know what this feeling is, and probably won’t ever figure out what I was feeling tonight.  That’s okay, I know there are plenty of good and bad feelings in the world.  I don’t have to figure everything out perfectly.  But, still, it would be nice if I knew how I felt!