Tag Archives: Prejudice

“You’re an Adult.”

Last Tuesday, I went to the dentist. I have trouble taking care of myself, including brushing my teeth. I can’t remember to do it regularly, and when I do remember, I find it hard to motivate myself because I’m sensitive to the feel of the toothbrush and the taste of the toothpaste. The dentist gave me a mouthwash with a relatively neutral taste and told me to rinse with that after toothbrushing. I am allowed to brush my teeth without toothpaste for now to get used to the feel of the brush and into the habit of brushing first. The dentist instructed the nurse who was with me, a nurse from another ward, to tell the staff they needed to actively remind me to brush my teeth. The nurses on my ward, however, didn’t feel like this, saying I’m an adult so should take responsibility for my own self-care.

The phrase “you’re an adult” is uttered time and time again when I (or other patients, but I’m speaking for myself now) require help or display a problem that is not normal for a healthy adult. Saying we’re not healthy is not an excuse, because what are we in treatmetn for then? A nurse told me yesterday that if I had a low IQ or had been floridly psychotic, this would’ve been an excuse not to be able to remember my self-care. As if people with an intellectual disability or psychotic disorder are not adults.

The thing is, whether you’re physically or mentally capable of taking care of yourself, does not determine whether you’re an adult, and whether you’re an adult, does not determine your respectability. The idea that an adult should be capable of caring for themself, is ableist. The idea that an adult (at least, one who displays adult abilities) is more respectable than a child, is not just ableist but ageist too.

Honestly, I don’t care whether I’m an adult. I don’t care whether my abilities reflect my age. I care that I’m an individual and have individual needs. In some areas, I’m self-reliant. In other areas, I require practical care. In others, I require guidance. None of this makes me deserve less human dignity. Similarly, children and persons of any age with intellectual disabilities deserve as much human dignity and respect as a healthy adult does. We treat them differently, of course, but that is because they have different abilities, difficulties and needs. A child is different from an adult, and an adult with a disability is different from a non-disabled adult, but that doesn’t make them a child. Everyone is an individual who deserves to be treated like an individual with dignity and human rights.

The Realities of an Asperger’s Diagnosis

A few weeks ago, I read an article in a women’s magazine about autism. It started out by explaining that autism is a spectrum and then went on to say that Asperger’s Syndrome is the mildest form of autism. Someone sent in a response saying that Asperger’s can be severely disabling too and, because it is often misunderstood, may be more severe in some ways than classic autism.

I have an Asperger’s diagnosis. I also have a high IQ. I can attest to the common misconcetpions surrounding an Asperger’s diagnosis. For one thing, the ability to speak does not necessarily mean that someone can communicate effectively. Even if speech on the surface makes sense, that doesn’t mean the Aspie’s words come out of their mouth as they were intended. However, because we have normal to above-normal intelligence, we’re assumed to “know better” and our miscommunicatin is understood to be willful misbehavior.

Speaking of behavior, it is a common misconception that Aspies don’t have as severe or as frequent aggressive or self-harming outbursts as those with classic or “low-functioning” autism do. H.L. Doherty, a father of a child with classic autism and an intellectual disability, often makes this mistake. He does so again when he talks about shards of severe autism reality. In this post, Doherty describes the consequencces of his son’s self-injurious meltdowns, and accuses autistic advocates of ignoring this reality. He connotes that those with “high-functioning” autism, ie those who can disagree with Doherty on the Internet, do not have these experiences. I, for one, do.

When I still lived in independence training, I had meltdowns almost everyday. An experience like the one Doherty describes is quite familiar to me and occurred regularly until I went on medication in 2010. My last episode of severe self-injury was two months ago, and it was so scary that I went into seclusion for a night.

Now I for one agree with Doherty on some controversies. I disagree on others. My agreeing or disagreeing and how eloquently I can put this into writing, does not change anything about my functioning level in any other area than written communication about a specific topic. I am too ashamed to write about some of my Aspie realities. The details of my severe self-care difficulties, for example. I know that Doherty and his supporters would not believe me anyway. After all, I’m so intelligent. Yes, I am. Relative intelligence is required for an Asperger’s diagnosis. That does not cause any of my difficulties to go away.

Disability and Childlessness: It’s Complicated

I am disabled. I am childless. For a long while, I identified as childless by choice. In a way, it is a choice, because I do not experience reproductive problems that I know of. In another way, it’s not a choice, because I would’ve wanted to be a parent. I’m not “childfree”. I am disabled, and this has influenced my decision to remain childless. That doesn’t make it not a decision, but it makes the decision tougher than had I truly been childfree.

On Musings of an Aspie, there’s a post on honoring your choices as an autistic woman (or man). It is a postscript to the autistic motherhood series on the Autism Women’s Network. The post concludes that older autistic parents have a responsibility to share what they’ve learned with the younger generation of autistics. This, in my opinion, goes for autistic childless people too. As autistics, we often feel left out, and it’s important to have people whose experiences we can relate to who are older than us and can share with us what they’ve learned. Likewise, we need to be mentoring the even younger generations.

I find it extremely hard to connect to people with whom I have enough in common that we can share our knwoledge and experiences and support each other this way. This may be because I have multiple disabilities. The Internet has opened a world for me, but when, with this current blog, I began to spread my wings outside of the disability blogosphere, it also amplified my differences. It may be just me, but I see Mom bloggers everywhere.

Childlessness, like disability, is a minority status. And now that childlessness is no longer the only way for disabled women, it adds up to someone’s otherness. I’m not saying that childlessness should be the norm again for disabled women. What I do want to say is that it’s still a reality for a lot of disabled women (and men), and that it’s often still a painful reality that is complicated by prejudice and stimma both surrounding disability and childlessness. I do understand that the assumption that disabled people are childless by default, needs to be challenged, but this assumption should not be replaced with additional stigma for the person who finds their disability actually does make it impossible for them to become a parent.

Finding Answers in Disability Limbo

A few months ago, I wrote a post about my need to belong somewhere within the disability community and my possibly intruding upon communities I don’t belong to. One such community is that for brain injury patients. As far as I was concerned, “brain injury” was always followed by “sustained after birth” or preceded by “traumatic” or “acquired”. Yet brain injury can occur at birth too. Only then it’s not called brain injury, right?

Since my autism diagnosis is being questioned again, I’m feeling an increased need to figure out what exactly is wrong with me. In part, this entails putting a name to what I have. Are my motor deficits diagnosable as dyspraxia, mild cerebral palsy, or are they not diagnosable at all? Am I autistic or not? Then again, putting a name to my disabilities is but one of my quests. As I’ve experienced, most communities are open to those with an uncertain diagnosis, so it’s not that I need to have a diagnosis to fit in with a support group.

Back when I was diagnosed with autism, I didn’t want a specific ASD diagnosis. The psychologist, who ultimately gave me an Asperger’s diagnosis anyway, said he wanted to do an assessment of my strengths and weaknesses. I don’t know whether a quick DSM-IV interview amounts to that, but to me, a lot of questions remain unanswered.

It could be my slight neuropsychology obsession, but I want to know why I have issues I do have. I want to understand, in a way, why I can’t function at the level I’m supposed to given my intelligence and verbal abilities. Is it normal to be unable to load the dishwasher but able to write a lengthy blog post? I don’t think a diagnosis, whether it’s autism or brain injury, will answer this question per se, but what will? It is most likely that I have quite bad executive dysfunction, but can this at all be validated? Should it?

It isn’t purely that I’m overanalytical and want to understand my every bit of brain function. It’s more that I’m struggling terribly with being seen as more “high-functioning” than I am in daily life. Not that I want to reinforce the stereotypes surrounding the Asperger’s diagnosis, but my mere existence won’t defeat them either, and I’m sick and tired of having to prove myself.

Why I Can’t Live Independently

I was asked the question again, on a Facebook group for parents of bliknd/autistic children (where I share my perspective as a blind/autistic adult). When people realize I’m above-average intelligent and verbal, they often ask why I can’t live independently. That is, unless they, like my therapist, assume that no blind person can. She originally had it written into my treatment plan that, if I had not been blind, I would’ve been able to live independently with outpatient support. I had this removed because it quite likely would’ve impacted my funding.

Honestly, it is quite a painful question for me. I have somewhat suppressed the memories of the time when I did live on my own, and don’t really like to think of that time. Then again, I have to if I want to clarify my support needs.

I couldn’t live on my own back in 2007, when I tried, because I had terrible meltdowns in which I’d become self-injurious and aggressive, and I wandered. I also couldn’t do daily living tasks because I needed very clear instructions and needed lots of one-on-one instruction. I lived in an independence training home prior to this and got lots of instruction there, but I got overwhelmed very easily and had meltdowns etc. then. I was more or less kicked out of the independence training home because of my meltdowns.

In addition, I have mild motor deficits. I don’t know whether this is the cause of my inability to perform simple daily living tasks like putting a topping on my bread, but I can’t do these things. My gross motor skills are better, so I can technically operate a vacuum cleaner for example, but I get overwhelmed by the noise so much that I either forget where I was vacuuming or shut down completely. Vacuuming and sweeping are not the problem, as blind people in the Netherlands generally get fudning for a housekeeper to do these tasks. Unless, that is, you have a partner who is non-disalbed, but then again my husband has to do all the cleaning now that he lives alone, too. Same for cooking, so these are not a problem.

It is really hard to put into words what went wrong when I lived on my own. Yeah, I had meltdowns and wandered, but, as an intelligent person, can’t I just control those behaviors? With medication (including a high dose of an antipsychotic), these behaviors have become less frequent, but other than that, I’ve found nothing that helped me. The meltdowns and wandering still occur regularly enough that it’d be a safety issue if I lived independently again. Besides, the fact that I have 24/7 support available should I need it now likely causes the meltdowns to be less frequent. I have learned to delay my need for assistance, but still ultimately need a good deal of assistance during the day. Besides, in cases of (perceived) emergency, I just need to be able to reach someone. And you might say my perception of emergencies is screwed, but when I’m sensorially and/or cognitively overloaded, I can’t make that judgment. Oh, did I mention I can’t get myself out of my husband’s apartment safely using the stairs, which I’ll need to in emergency cases? I could likely learn this, but I’d need a fair amount of instruction. I do know the stairs and don’t know whether I could walk them without falling if I didn’t get assistance. For those who’ve seen me walk the stairs at home fine, these are firstly different (indoor) stairs, and secondly my motor deficits have gotten slightly worse.

When I write this, I can hear the judgment of certain people, including possibly certain readers, in my mind. Some people may want to minimize my support needs because they are in denial. Others mighht want to discredit my opinions, for I am allegedly not like their child. I was going to write about all the unsafe situations I’ve been in (and not just unsafe as perceived by me) because of lack of support, but I think it’s pointless. It hurts too bad to think of these, and most likely people aren’t going to change their perception of me unless they genuinely want to, in which case the above paragraphs should suffice.