So, the answer would be for my child to get a situation like Ballastexistenz has, with perhaps a bit more care in some areas than Ballastexistenz and a some less in other areas. My child would need a case worker to make medical decisions, I think Ballastexistenz can do that for herself much like a typical person does.

The whole point is that society can step up to the plate and provide dignified situations for disabled people, in their own homes, without saying, “LOOK AT WHAT WE HAVE TO DO FOR THESE HEINOUS BURDENS!”

A “normal” sibling can turn into an extremely handicapped sibling in 1 second- say in a car crash. They could turn into a person in a power wheelchair controlling it with a mouth stick and unable to speak. Or maybe that person would just be in bed for the majority of the rest of his or her life. That’s what life is, dear hearts. Fragile.

My typical adult child might have a harder time finding a spouse because of the spectre of the (cue the spooky music) disabled sibling. But think of all the slimy creeps that would be weeded out by that “hiddeously shocking idea of possible be stuck with the disabled sib.” Also, if future spouses learn of the disabled sibling, they might shudder to have a similar child of their own (you know genes and things run in families) another way to filter out the scum in potential spouses. Only ones with big hearts and lots of integrity would be likely to stay around for the courtship.

“a reader’s” nastiness is a very poor advertisement for the empathy “a reader” implicitly boast of.

The emotional burdens she describes are understandable and legitimate, yet, in a fit of intolerance, you twist her words into a characerization of her brother as a burden. You go on to project your incomplete understanding of her situation onto yourself, indifferent to her situation, which differs from yours. It is precisely your immediate perspective that you reflect.

Mrs. Kornylak’s hope for children who are not disabled is natural and healthy. If this disturbs you, then you are the unhealthy one.

It’s not a misunderstanding, it’s a difference of opinion. It’s not a simple message, there are complexities hidden under it in the assumptions that our society would have us make about disabled people, and complexities in the consequences of doing so.

It’s not trivialization, it’s a totally different take on what it means to view disabled people as burdens.

It’s not twisting people’s words, it’s seeing their words from a perspective that they probably don’t.

And I happen to know my family very well. I also know that automatically and entirely nullifying someone’s words and declaring them vacuous instead of actually engaging with the ideas is far more personally nasty than simply disagreeing with them.

If you’re going to go to a blog by a disability rights activist, you will hear at least some opinions similar to this, no matter who they are and what your assessment of their character is. That is because we have developed other ways of thinking about disability than the one our societies hand us pre-formed.

My brother is autistic, by the way.

You trivialize their burden, which demonstrates an overwhelming ego.

You twist their words, which demonstrates low character.

You don’t know what your loving family thinks about you, you lack the capacity. Your words on that are vacuous. So too, your words on Mr. and Mrs. Kornylak are null and void.

If you live in a place where institutions or living with family are the only choices, you need to advocate for better choices, you don’t need to advocate for seeing disabled people as burdens. You can get the point across about the assistance we need without describing us as burdens or permanent children or undesirable possible future children as well.

There are plenty of families that do exactly that and don’t whine. My loving family doesn’t whine about my existence. They have fought for services for me without casting me as a burden. I don’t know you, and I don’t think you’re my family.

Autism is a spectrum disorder. The sibling to which she refers will need life-long care: to eat, to dress, to bathe, to go to the bathroom. Though we may hope, he will never discuss ontology, maintain a blog, or write a book on what it is like to be autistic. Still, his “disorder” falls under the same spectrum of Autism, which includes individuals high-functioning enough to do these wonderful things.

Horrifying as it may seem to some, families of children with a high level of disability carry a burden. This does not necessarily mean the children are not loved as wonderful, unique individuals by their friends and family. That Vera’s brother is verbal at all is a testament to the love, care and yes, hard work of his family.

To ignore the simple reality of this burden is to deny that families of austistic children *may* need help, both directly through special services and indirectly through tolerance and education of the rest of our society.

If you would prefer to live in an institution than with a sister who “thinks of you [as a burden],” it is assumed that you also have that choice, which not everyone has. Don’t denigrate the “whiners.” We are your loving family.

Thanks for your insightful and intelligent blog.
Andrew Kornylak

As for my wiring, no, I’m not “wired for prejudice”, and I would dispute the notion that anyone is. I have mild inattentive-type ADD (Dx’d) and am mildly on the autism spectrum (self-Dx’d), am more of a “sprinter” than a “marathon runner”, and need more downtime (including time by myself) to recharge than I have generally gotten since I became a parent. I don’t think I could handle getting even a dog at this point, let alone another kid. I’m not complaining, because I can’t imagine a life much more fulfilling than the one I live with Ben exactly as it is. I’m just trying to be honest about my limitations. It’s better for both Ben and myself, and my wife, whose plate is also very full, that we have chosen not to take on the responsibility for another child.

Anyone who calls that prejudice, imo, needs to walk a mile in my shoes, and then call me prejudiced when they’re a mile away from me, and have my shoes (apologies to Stephen Wright for that quip).

I’d also add that my attitudes toward all life, including the sanctity of fetal human and all animal life, have been undergoing a continual shift in the direction of “preservation” and “avoidance of slippery slopes where possible”. For example, six months ago, I would have had much less hesitation about agreeing with the outcome of the Terry Shiavo case. Now, I would tend to say that absent a living will, she should have been kept alive. I’m also more strongly convinced of the ethical arguments against killing animals and eating their flesh, FWIW. All of this is directly related to being punched in the gut, via Autcom and so on, with the realization that a person’s appearance (including what I am able to perceive of their behavior) often has very little to do with what’s actually going on inside them.