Accusations of Abuse, Guardianship, and Community Response

Recently, the story of Sharisa Joy Kochmeister has been the focus of much attention in the advocacy community.  And I’ve stayed silent on it, because, frankly, I don’t know the facts of the situation.  But I can’t keep doing that.

My understanding of the background of this – which is open to any and all corrections people may have – is:

  • Sharisa is a 30-something adult
  • From a Denver Post opinion piece (not an investigative article), “The ordeal began in March when her father was accused of abuse when he was seen in a Denver hospital using his finger to clear his daughter’s throat after she had vomited. She kicked him. He pushed her and it was caught on video.”
  • The father was accused of Manchausen by Proxy. This basically means that Mr. Kochmeister was suspected of making Sharisa ill.
  • While the father has not been charged with a crime, the county where Sharisa lives has kept Sharisa’s parents (and indeed most other people) from visiting her.
  • Sharisa is unable to communicate without her father or sister being physically present and possibly facilitating (through actions such as holding a communication device).

Most of the comments, petitions, and advocacy pieces I’ve seen publicly start from the assumption that the abuse allegations are false, for several reasons:

  • People personally know the parents and think they are good people.
  • That accusations of Munchausen by Proxy are often wrong (For instance, in Where is Sharisa Joy Kochmeister, there is a section on false allegations of Munchausen by Proxy with the leading sentence in bold saying, ”Beware the accusation of Munchausen by proxy”).
  • That criminal charges have not been filed against the father.

I’m uneasy with this logic, and I want to explain why. So let me go through each of these three points.

Her Parents are Good People

Perhaps.  I don’t know them, and I’ve known some people I thought were wonderful that turned out to have some really awful, evil parts of themselves.  For instance, one of my best friends in college was recently found guilty of molesting his daughters.  I never would have predicted that, but the evidence was extremely strong and convincing, and I’m glad his daughters are no longer in his care (he is currently serving a long prison sentence).

So I can’t comment on whether or not the parents are good people. I will say that I’m concerned and saddened that any disabled person can communicate only through a very small number of people (or, in the worst case, one).  I am concerned that Sharisa is unable to communicate through anyone but her father, for reasons I’ve written about in general terms elsewhere – how do you report abuse if your abuser is always there when you communicate?

I’m not dismissing her ability to communicate.  But I know that influence, particularly in abuse, and particularly when it’s done by someone who has the potential to do great harm in retaliation, is a powerful thing. And I also know that the vast majority of abuse victims, when asked why they didn’t report that abuse, say the same two things: either they felt they wouldn’t be believed (because the abuser is respected or seen as a wonderful person) or that the abuser can make things worse for them.  We’ve seen both with Cosby’s accusers, who felt they wouldn’t be believed and that Cosby could retaliate and essentially keep them from their dreams in modeling or show business. If this is hard for women who are, in some cases, thousands of miles away from their abuser, imagine what it’s like if that separation isn’t possible.  It’s also not just abuse – imagine other decisions, such as becoming sexually active, deciding whether or not to seek an abortion, or discussing treatment options for STDs – would you want to have those conversations with a parent in the room?  Unless you have a particularly unusual relationship with your parents, probably not.  We are all influenced by people we are around, and that influences what we do and don’t say. It’s one of the reasons it has taken me so long to write this – but it has become too important not to.

When my wife was hospitalized a couple years ago, I remember how I was asked to leave the room for a few minutes, being told they needed room to transfer my wife into the bed. I asked her they did while I was gone, and she said that, yes, they did transfer her to the bed, but that they also asked her if her relationship with me was good and if she wanted me to be there – she was kind of surprised by the questions (I don’t think there was any suspicion of abuse by me, I believe this was asked to nearly all patients). I’m not offended by that in the least – for some abuse victims, the only time they have the chance to be protected from their abuser may be when they are hospitalized, and I thought it was one of the excellent things the hospital does – if it gives just one abuse victim the courage to speak, it is an awesome way of doing business. It is absolutely something a hospital should do. Likewise, it’s important for abuse victims to have means of communicating that don’t involve their abuser’s presence or (real or imagined) control.

Accusations of Abuse are Often False

This simply isn’t true, but even if it is, it does not mean that real abuse doesn’t exist. Too often we hear about children (I’m not implying Sharisa is a child, but most of the time we hear about state-investigated abuse, it is regarding children) that were inadequately protected by the state after abuse allegations were made.

There are cases where Munchausen by Proxy is real – we should not dismiss this as merely claims that the evil state makes against parents of disabled kids. There is evidence that it may be over-diagnosed in cases where the caregiver is not the cause of the illness, and there is a real illness, albeit likely a hard to treat one.

But, there are also real instances where people are harmed by fictitious disorders imposed on them.  According to the Cleveland Clinic, approximately 1,000 cases of reported child abuse per year are related to this.

It is irresponsible for advocates to say that abuse did not occur when they do not have the full evidence. Abuse can happen to anyone, and abusers come from all social strata, all races, all sexes, etc.  It is not uncommon that abusers are well regarded and seen as “the least likely person” to abuse another. So all allegations of abuse must be taken seriously.  In fact, this is something the FC (Facilitated Communication) community has been stressing – while there was controversy regarding apparently false reports of abuse by facilitated communication users, there were also real cases of abuse that were investigated and found to be true, backed up with evidence in addition to the victim’s own words. Allegations of abuse must be investigated, and anyone that says otherwise is not an advocate for vulnerable people.

SOME PEOPLE USING FACILITATED COMMUNICATION HAVE MADE ALLEGATIONS OF SEXUAL ABUSE. SOME HAVE BEEN SUBSTANTIATED.

Some individuals have made allegations of abuse, but there is no evidence that the numbers of allegations by individuals using facilitation is proportionally different than the numbers of allegations made by speaking people. In a survey made at the SUNY Health Sciences Center, it was found for a given time period that of 6 case in which individuals alleged they had been sexually abused, for 4 of them there was physical evidence they had been abused (Botash, 1993). Cases can lead to court convictions (Randall, 1993) and/or confessions by the accused. As with allegations made by the nondisabled population, some allegations may be unfounded and others simply impossible to prove.

The above is from Douglas Bilken, a leading FC proponent, writing “Facts about FC“.  Full citations are available in the link.

Regardless of your views on FC, allegations of false abuse don’t mean that real abuse doesn’t happen. For Munchausen by Proxy, in particular, what is important is whether or not incidents of more severe sickness are associated with the presence of the accused. So there is one question that is relevant here, but which the answer is not known: Have any of Sharisa’s medical conditions improved with the absence of her family? That alone doesn’t prove that abuse occurred, but it can help substantiate that the family is not the cause of any of the symptoms if all the symptoms continue despite the absence of family.

Likewise, I would think it inappropriate to say that Sharisa’s parents did abuse her – most of us (and everyone I’ve seen speaking publicly, with the exception of Sharisa’s family and Sharisa in the presence of her father) don’t have enough knowledge of the situation.  And we should see false allegations of this kind or terrible. Instead, I believe we should say what is logically required: We don’t know.

Criminal Charges have not been Filed Against Sharisa’s Father

This is true – there are no publicly known charges against Sharisa’s father, and is important for everyone to remember. That said, even charges don’t prove someone’s guilt – that’s why we have a trial system. But the American justice system is designed to only convict people when the judgement is that they are “guilty beyond reasonable doubt”.  Thus prosecution may not occur in all cases where a crime has been committed, particularly if a prosecutor believes it is unlikely a jury would agree “beyond a reasonable doubt” that a crime has occurred.

That said, there is a court process that determined Sharisa’s current placement and prevented Sharisa’s family from visiting freely.  We don’t have the information of what was presented at those hearings, so it is irresponsible for us to confuse lack of criminal charges with lack of a crime. Again, we simply don’t know. It could have been a huge miscarriage of justice against Sharisa and her family, but it also might have been justified in light of the evidence. We don’t know.

What Needs to be Done

So, we don’t know if abuse occurred or not. If it did, she should not be forced to live with her abuser. But her opinion still must be respected. People who are competent are allowed to make bad choices.

If it didn’t occur, where should she live? Where she wants to, clearly.

Unfortunately, the county believes she isn’t competent, thus someone else gets to make decisions like where she lives. On top of that, she is only making statements about where she wants to live in the physical presence of someone that may or may not have abused her. This makes it very hard for the county or anyone else that wants what is best for her, and doesn’t know if abuse occurred or not, to know what she truly wants.

I wish she could communicate without a family member in the room. If she could, and the family’s statements are correct about this not being a case of abuse, this issue would likely be resolved.  If she could communicate without a family member in the room, and was as courageous as I believe her to be,  she could affirm or deny abuse allegations. I have long believed that the primary goal for an autistic person’s communication should be that they are able to communicate in a variety of situations, with a variety of other people around, and using a variety of techniques. I stand by that.

But of course it’s not always possible. What is best is not always what happens. Clearly this is one of those cases, and someone’s ability to live where they want to is on the line. If you can’t communicate (which is what the county clearly believes), you can’t direct your life.

She was placed in a nursing home for a while. Nursing homes aren’t the right choice for anyone. I could write more on that, but other advocates have written plenty if you want to know why.

The county must expend the resources necessary to provide an environment as conducive as possible to communication. This means she needs the electronic devices she uses to communicate to be available and maintained. She needs to be assessed by experts who have a presumption of competence. She needs to be listened to when she communicates with ways other than language.

Last week, Disability Law Colorado (the P&A agency for Colorado) issued a statement that said that this is happening, and that the situation is more complex than media and many advocates have said it is. Of course they could be wrong, lying, or have a grudge against Sharisa or her parents.  But they also may be right.

That doesn’t mean we should just trust them and remain silent. We should demand that Sharisa can fully participate in the community and that the State ensures that everything possible is done to allow her to communicate.  The abuse allegations should continue to be investigated: in particular, has any part of Sharisa’s medical conditions shown improvement since her removal from her family? Was the video evidence so strong that it, by itself, justifies removal of Sharisa from her family?

There are lots of questions. And this is not a case of child abuse. When a crime is committed against an adult, and is not a sex crime, the public does generally have the right to know the details, so that we can make informed opinions.

Regardless, our advocacy must be first and foremost about Sharisa and her desires. Not the state’s. Not her parent’s. One side says that her communication desiring to be back at home is either not hers or is influenced by her father. The other side says she wants to be home. What Sharisa wants is what is important – not what her father wants, and certainly not what the county wants. And our advocacy should be focused on making sure she has as much of an opportunity to voice her views without a shadow of influence as possible. I fear that may not be possible, but I really don’t see any other way to get the resolution that Sharisa needs while her communication is being dismissed, as it is now. Lack of apparent influence is important (and I use the term in the general sense – the same thing would likely happen if a person speaking with their vocal cords only talked with someone that was considered a potential abuser in the room – it might even strengthen the case that abuse is occurring). I hope it’s possible and we need to advocate that she be given every opportunity to communicate this way. Starting with 24×7 availability of devices she’s used in the past to communicate and support people that are not making presumptions about her parents. Most of all, they must not presume that she is not competent.

Certainly if you have other evidence that the rest of the community does not have, absolutely use that in your decision making. But the rest of us need to be responsible and to use the evidence we have, realizing we don’t know several really critical pieces of this story. I am not saying her parents have done any wrong. Nor am I saying they haven’t. Because I don’t know, beyond saying we need Sharisa’s voice a lot more than mine in this discussion.

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.

What Makes Life Hard?

I’ve learned something. What was hard for me at age 10 is not what was hard for me at age age 20 and was not what was hard for me at age 30.

At age 10, in the middle of the most difficult time of my life, I was bullied mercilessly. During the following decade, I was sexually abused, beaten, and humiliated. I was suicidal because of this. I don’t think it would be natural not to be.

At age 20, I was no longer bullied and I had actual, real friends! I had a place to belong. However, over the next ten years, I found three things difficult: building connections with other adults as they married and had kids; taking care of my personal needs (eating, etc); and dealing with my sensory issues. I spent much of my 20s learning, “OH! I don’t have to live with noise!”

In my 30s, I got married, but still have some disconnection with others. I’ve found the change between then and my 20s is that the sensory issues no longer are as huge in my life (thanks to understanding them and creating an environment which considers my needs) and my self-care is infinitely improved thanks to having a wonderful wife who makes sure I have food to eat (an amazing blessing). Where I find difficulty today is with work – as I’ve aged, I’ve gained more responsibility in my professional career – and that increases the social demands. There are different social expectations placed upon an entry-level programmer than are placed upon a senior-level team leader. I suspect it’s difficult for everyone, but it probably is easier if your team speaks your language (not English, but rather autistic vs. neurotypical).

What will be hard in my 40s? I have no idea. Life changes, and I’ve learned I am not great at predicting the future. I do know that since my 20s, my life has been a good one – I’ve been very fortunate to have good people surrounding me, good opportunities, and plenty of luck. That could change, or it could remain. Only time will tell.

Sometimes we need to take a step back from our worries about the future and concentrate on what we know about the now.

An Anniversary

Yesterday was my wife and I’s forth wedding anniversary. It’s been a wonderful time. We have one of many autistic marriages we know of – it’s clear we can form relationships just fine, thank you very much. I also think the basis of our marriage – honesty and communication – would help out a lot of other relationships among people who aren’t necessarily autistic.

I’m also thankful that in the USA, my federal government is recognizing same-sex marriages. That removes some of the taint of unequal treatment of others from my marriage, and thus makes my marriage more beautiful. Others are for the first time experiencing what straight couples have experienced for years – being treated like people.

Yet others still have trouble getting married – group homes deny people the ability to live together, people may live in states our countries that refuse to recognize gay marriage, or there may be any number of any reasons. My wife and I spent some time yesterday thinking of this.

We also spent some time thinking about the people who are single, either through choice or because they have not yet met their future spouse. There’s a ton of discrimination against single people – society assumes we should be married, even when we aren’t (and may or may not want to be). So we also remembered those people.

Our desire should be everyone’s desire: we want to see people happy (obviously without harming others). Whatever that ends up meaning.

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.