Respect, dignity, and rights.

re⋅spect /rɪˈspɛkt/ [ri-spekt]
–verb (used with object)

1. to hold in esteem or honor: I cannot respect a cheat.
2. to show regard or consideration for: to respect someone's rights.
3. to refrain from intruding upon or interfering with: to respect a person's privacy.
4. to relate or have reference to.
   

(courtesy of Dictionary.com)

dig⋅ni⋅ty /ˈdɪgnɪti/ [dig-ni-tee]
–noun, plural -ties.

1. bearing, conduct, or speech indicative of self-respect or appreciation of the formality or gravity of an occasion or situation.
2. nobility or elevation of character; worthiness: dignity of sentiments.
3. elevated rank, office, station, etc.
4. relative standing; rank.
5. a sign or token of respect: an impertinent question unworthy of the dignity of an answer.

(courtesy of Dictionary.com)

right /raɪt/ [rahyt]
–noun

1. a just claim or title, whether legal, prescriptive, or moral: You have a right to say what you please.
2. Sometimes, rights. that which is due to anyone by just claim, legal guarantees, moral principles, etc.: women's rights; Freedom of speech is a right of all Americans.
3. adherence or obedience to moral and legal principles and authority.
4. that which is morally, legally, or ethically proper: to know right from wrong.
5. a moral, ethical, or legal principle considered as an underlying cause of truth, justice, morality, or ethics.
   

(courtesy of Dictionary.com)

In the comments to this post, I found several references to all those poor autistic adults who are stuck in institutions because they weren't given ABA and never recovered, so they simply are incapable of higher-level cognition or any form of independence and need to have their lives dictated by non-autistic people, who of course know better than the autistic people what is best.

Many people have written elsewhere about institutions, and these people have personal experience with them, so I won't address that specifically (I would link to those posts, but can't find them right now; please feel free to share in the comments). What this post is about is the attitude of non-disabled people toward individuals with disabilities.

Basically, the attitude can be boiled down to "I'm worth more than someone who has a disability, because I am not disabled." This lack of respect for others leads to the removal of dignity and the stripping of rights of individuals with disabilities.

Let's be clear here: a person is worthwhile because he or she is a person and is alive. I don't care if the person can't communicate anything more than basic emotions and is unable to perform any personal care tasks (e.g., A, who I wrote about here), is able to speak in complete sentences but has mobility difficulties (e.g., J, who I wrote about here), or is able to pass as completely non-disabled in their everyday life and is able to perform most necessary day-to-day tasks without support (e.g., my friend DJ, who blogs here). There is a certain intrinsic worth to every human life, and we stand to learn something from everybody, no matter their cognitive abilities.

All people are capable of some level of understanding. Organizations that provide services to individuals with disabilities often create "plain language" versions of their literature, to give individuals with cognitive delays (or even English as a second language) a better chance at understanding it. Some organizations I know of in Alberta have gone so far as to help the individuals they serve create videos that make processes clearer for everyone. (Please note: these video projects are done at the behest of the individuals receiving service, so nobody is being exploited.)

Respecting a person means preserving their dignity and enforcing their rights. It means understanding that their opinions about things might be different. It means allowing them to speak out, even if what they say is disturbing on some level. It means granting privacy. These principles are important for everyone, by the way, not just individuals with disabilities. We need to learn to respect everyone in our lives.

Arguing for respect does not deny the difficulties many people face as a result of their disabilities. I would say that A, the woman I mentioned earlier, is the most severely disabled person I have ever met. Yet she lives as full a life as possible, in her mother's home. She has friends as well as staff, and I got to see video of her birthday party the day I met her family. She couldn't open her presents, but a niece did so for her, and she smiled throughout the process - an indication that she understood that these things were for her, and that she liked them. Indeed, clothing was obviously chosen with care and attention to things like A's favourite colour and what is popular right now for young women in their twenties. A will probably never be able to say words, and she will probably never type blog posts. But she is cared for and about, and her needs and desires are considered carefully by those around her. That is respect.

There is more I would like to say here, but this will suffice for now; my own disability is causing my writing to become more disjointed than I would like. Eventually I will find the words and put them up for all to see.

This post's icon was created by the author.

New e-zine.

In 2005, I had an idea for a magazine.

Well, it took a while, but there is finally a web site up and I am hoping to have an issue out in October. Autisticonnections is going to include writing and artwork by individuals with autism, autism-related disorders, and other neurological disorders like ADHD. We will have poetry, fiction, and personal essays, and hopefully a few proper articles, as well. None of the contributors will be neurotypical, if at all possible.

Please check out the web site at http://autisticonnections.org. I would love some volunteers to help me out with this project, and of course I need contributors!

Ableism is bigotry and discrimination at its worst.

One of my dear friends, J, has cerebral palsy and fibromyalgia. As a result, she has mobility issues that she handles quite nicely with her service dog and wheelchair. She is sometimes able to navigate without either, but as a general rule she prefers to bring her dog to help her get around. This dog was trained by her and is incredibly well-behaved. He wears a vest when he's working, so you know when you can't pet him. The two of them do presentations about disabilities and service dogs for schools and organizations.

J and I met via NaNoWriMo, that writing contest I do every November (you know, where I have to write 50,000 words in 30 days). As you may or may not be aware, I was the regional coordinator (ML) for Calgary from 2005 until 2008. (I may choose to take up the mantle for Saskatoon, but that's beside the point.) I take my ML duties very seriously, and always did my best to ensure that the locations I booked for meets were accessible for individuals with disabilities who used wheelchairs as well as for anyone who had to rely on public transit to get where they were going. J brought her dog along to the first meet she came to, and it was a complete non-issue. There were nearly 50 people in our party, and the place was busy, but he was great and lay under the table and didn't disturb anybody. He behaved the same way at every other meet she brought him to. The one time J used her wheelchair, it was cumbersome and unwieldly, and there were a lot more issues getting her where she needed to be.

This weekend is the birthday of J's mother-in-law. There is much drama surrounding whether or not the dog is to come to the birthday dinner, which is being held at a restaurant he has been to many times in the past.

J's sister-in-law asked if they could leave the dog behind, purportedly because when she told her mother that the dog would be there, her mother sounded "sad." She says that J should just use her wheelchair.

There are many reasons why the chair is not an option, the main one being that J uses botox injections to loosen up her leg muscles, and at this point in the botox cycle she is in pain a lot of the time. The chair exacerbates this pain. That alone is reason enough to forgo the chair and bring the dog instead. In addition to being more difficult to maneouvre, the chair will draw more attention than the dog, and it limits J's independence. Given the fact that Aids to Daily Living are meant to increase the independence of individuals with disabilities, it should be fairly obvious that the dog is a better choice, period.

Except, apparently, the mother's feelings about this matter trump the many reasons why the dog should come. According to the sister, the dog should not be an option because her mother should be happy on her birthday, and because the mother sounded sad on the phone, the dog's presence would make her unhappy, and that is all that matters.

Unfortunately for J's in-laws, one person's happiness does not trump someone else's right to be as pain-free and independent as possible, especially when the methods to be employed break no laws and put nobody in physical danger.

Here is how I put it on Facebook (names have been altered):

There is absolutely no reason why [the dog] should be left at home.

It is discriminatory to try to mandate what Aids to Daily Living (ADL) an individual with a disability can and cannot use. The point of ADL is to INCREASE INDEPENDENCE.

[The dog] is a better option than the chair because the dog increases independence much more than the chair does. I have seen both in action, and the chair is much more difficult to deal with.

I have never even THOUGHT about asking that [the dog] be left behind for events that I have run, because it would be discriminatory to do so. Accommodation means booking the event in a place where individuals with disabilities will be comfortable and that is easy to access for those with mobility problems.

The chair causes pain, as well, which is important to consider. I don't think someone's emotional comfort is more important than the physical comfort of someone else, especially if the person who will be in physical pain is already dealing with constant pain anyway. What kind of a person would expect or even ASK that of somebody? Seriously?!?

Accepting somebody means accepting their disability, as well. This means accepting the different ways they cope with their disability. Some people with ADHD take medication, others do not. Some blind people use guide dogs, others use a cane. Some deaf people communicate using speech, some use sign language. Some people with mobility problems use a service dog, some use a wheelchair, some use a scooter, some use a walker, some use a cane. Some people with epilepsy have a service animal that alerts them to seizures, some don't. There are a lot of different ways to deal with disabilities, and only the person who actually has the disability knows what is best for their particular problems.

Someone needs to ask C's mother why she doesn't want the dog there. Sparing her feelings is a ridiculous excuse for not doing so. So far, all of this discussion and drama is taking place without her input, and that is not right. So somebody ask her. Then maybe there'll be some light shed on the situation, and a properly informed decision can be made.

In short, your closed-mindedness should not be J's problem, and if she and C choose to attend this dinner, I really hope they bring [the dog] along, because that is what is best for J and her disability.

The response from the sister was to completely ignore all points and focus in on her mother's happiness on her birthday. To which I replied as follows (names modified):

Wow, B, did you even read everything I wrote?

Yes, a person's happiness on their birthday matters.

However, the RIGHT of a person to be INDEPENDENT trumps the happiness of another person. [The dog] helps J to be more independent than the chair does.

Also, the RIGHT of a person to be as FREE OF PHYSICAL PAIN AS POSSIBLE trumps the happiness of another person. [The dog] is a less painful option for J right now.

Have you asked your mother what she thinks yet? Cuz if you haven't, you really should.

No, my opinion doesn't affect the situation. I never thought it would. However, it would be an incredibly Good Thing if you took a moment to actually LISTEN to those of us who deal with disabilities on a daily basis.

This is ableism, pure and simple. C's family (J's in-laws) is assuming that J can choose which mobility aid to use based on the convenience of others, and this is simply not true. While those of us who are mobile have the freedom to choose between walking, running, riding a bike, and any number of other choices, J hasn't got those choices. If she's going to get somewhere, she often needs the dog or her wheelchair. I think she does sometimes use another mobility aid, like a cane of some kind, but I have not seen her use it. I have, however, seen the dog in action, and I think he is probably the best option most of the time.

The extent of the sister's bigotry, by the way, is seen in her assertion that if J were blind and used a guide dog she would still ask that the dog be left at home. I can understand, to some extent, asking that a service dog be left behind, since they are less common and not as well understood as guide dogs. But to ask any individuals with a disability to change his or her accommodations to suit your sensibilities is outrageous. (And we know it's not allergies because C grew up with dogs in her home. This is something directed entirely at J and her service dog and seems to be something to do with disabilities in general.)

As J has put it, the dog is a part of her. Accepting J means accepting the dog. That's all there is to it.

To sum up, let me give the response Brad Bill offered over on Facebook (again, names have been altered):

The long and the short of all this seems to be that B has fallen on the wrong side of this issue. And the bigger problem is that --even if she knows it-- there's no graceful way for her to climb down and admit she's at fault.

As was said earlier, a person's right to be comfortable and largely pain-free will always be more important than someone else's perceived "comfort" or "happiness" --even on her birthday.

We do live in a free country, so B is perfectly entitled to think/feel whatever she likes, but anybody with a shred of wisdom and compassion and decency will know better.

Sad.

Sad it truly, truly is.

Detriment of the child?

I now have confirmation that the Canadian Union of Public Employees (CUPE) 748, in BC, is planning to remove the "detriment of the child" clause from its collective agreement with the school district(s) it serves. This clause ensures that no changes are made to the staffing for a child with a disability if that disability is one that requires consistency in said staffing (i.e., children with severe disabilities that require specialized supports in order to be included in their school settings; such support positions typically pay more than others).

To make things more clear, what this means is that special education aides (SEAs) in the union will no longer have any job security whatsoever, unless they're lucky enough to have the seniority required to let them pick and choose the plum assignments. While education and experience will likely still have a bearing on the hiring decisions, gone will be the days of a child retaining his or her aide throughout several years of his or her education. Retaining an SEA is important, mainly for continuity of care and security of the child. It also means that precious time is not lost at the beginning of the school year, as the SEA and the child get to know one another. When a change is made, the new hire needs to be introduced before the end of the prior school year, and the old aide needs to train the new one, gradually stepping back until he or she is completely out of the picture.

Without the "detriment of the child" clause in place, the schools will not be able to take into account the wishes of the children or families they serve. No, they will, instead, be required to allow 60yo Anne, who's been a secretary for the last 20 years, be an SEA for Billy, an 8yo autistic child, because she's taken a couple of courses in being an SEA and has seniority over Elizabeth, who is 24yo, has been working with autistic children for the last five years, and has been Billy's SEA for the last two. (Please note: None of these people are real. I made them up. It could happen, though, and that's the scary thing.)

I hate unions. Let's be clear on that right now. I think unions are, by and large, a huge waste of time. They are still necessary in some industries (e.g., mining), but overall they cause more headaches than they solve. Unions benefit the people at the top and screw over the people at the bottom. No different from the rest of society, I suppose. Part of the reason so many people in the automobile production industry got laid off was that the union refused to renegotiate wages. So, since the companies had to cut costs somewhere, they had to fire a bunch of good workers because they couldn't afford to pay them anymore. That's how messed up unions are.

Now, let's look at how unions (at least in Canada) work for the schools. What we have is a teacher's union and a support staff union. In the teacher's union, we find - well - teachers. In the support staff union, we find secretaries, bus drivers, janitors, librarians, and SEAs, to name a few.

What's the problem here?

The problem is that SEAs work directly with children and enhance their learning. Without the SEA, the child often can't attend school. This is very different from the other occupations included in their union - these occupations do not work directly with the children, and their presence does not make or break the children's education.

Real life example of how completely screwed up this system is:

A couple of years ago, the teachers in Calgary went on strike. Okay, that's the way it goes. All the children stayed home from school, because there were no teachers, so no education for any of them. Eventually, the union and the school board got things sorted out, and everyone went back to school.

Then the support staff union (CUPE) went on strike. The difference here was that all the kids still went to school. Except the kids who needed SEAs.

This is not equal opportunity education. It is not equality. It is discrimination.

If there must be unions, the SEAs should be in the same union as the teachers, or they should have their own separate union.

Children shouldn't be denied an adequate education simply because some people at the top of CUPE want to make a buck.

I can't escape it.

I'm not totally sure I want to, anyway.

I walked over to Tim Horton's this afternoon. This is a daily occurrence; it takes about 15 minutes to get there, I have a mocha and read my current novel, and then I walk home (or, today, to the library). It's a good walk, I go quickly, and I get in my cardio for the day.

I went too late in the afternoon today, though; I'm still experimenting with when is good - this location is pretty busy, and I sometimes have trouble finding a place to sit. So I ordered my drink and looked around for somewhere to sit.

The 4yo girl was blonde and very cute. She was sitting in a high chair at a table with her mother and (I assume) grandmother. I took the table next to them, and the child and I exchanged looks. I smiled, since I'm friendly and like children, and she smiled back. Then she started turning quickly and gasping at me, so I responded appropriately to her overtures; apparently this was the way to go, as she started tipping her head back to look at me upside-down. I responded by turning my head so we were both upside-down.

This did not go unnoticed by the adults in the child's life. I was informed that this little pixie is "actually very shy." (Not the first time that a child behaves toward me as if I were an old friend right from the start!) Her mother told her to ask me my name. She did so, and we embarked upon a 15-minute friendship. The child's voice was very quiet, and I had to lean in close to hear her when she spoke to me. It didn't help that I kept getting distracted by her adults' conversation.

It sounded like the little girl's older brother was having trouble at school. There were changes being made to how he was being dealt with. When he tantrums, he is put into a time out room (adjacent to the classroom), and the class is now being vacated because he makes so much noise that the others in the class can't get any work done, anyway. Classic situation for an autistic child, don't you think?

I held my tongue, though I desperately wanted to ask them if there'd been a Functional Behaviour Assessment done, and if the triggers for these meltdowns had been identified. It sounds to me like the boy's school is reacting instead of being proactive.

But I said nothing, because I am a stranger - not just to this little family, but to the city. There is no reason for anyone to listen to me.

Except that I care.

Next time, I think I'll speak up.

A bit about me and ADHD.

This was originally posted at The Buzz on Meds.

I was diagnosed with ADHD when I was 28. I'm now 32. It was February 11, 2005. I had gone in looking for the diagnosis, but I definitely wasn't prepared for it to be confirmed! I came home with mixed feelings. Did the diagnosis change who I was? Did it matter? What should I do next?

Well, I went to my GP with my papers and all; since I'd been diagnosed by a psychologist, I needed the GP to prescribe my medication. He stonewalled me (wanted to refer me to a psychiatrist, said, "You've waited this long, you can wait a little longer"), even though the medication I was looking at was Concerta, which is notoriously difficult to abuse!

I changed doctors.

I was put on 36mg Concerta, once a day, to start. It worked pretty well at first, but the rebound was bad and it stopped working well after a while.

So we moved up to 54mg Concerta once a day. That was an experience and a half! I had been told at my assessment that I was using anxiety to compensate for my ADHD symptoms and if I went on much longer without getting help, I would probably develop a full-on anxiety disorder. Well, 54mg Concerta gave me a week-long anxiety attack! Needless to say, I went back to the 36mg dose in short order.

I tried using just natural remedies like 5HTP that summer. I realized it wasn't working the day I managed to talk for a full 45 minutes, non-stop, about two or three different topics while driving my brother home from church. Oops! I called my psychologist, and she suggested I ask the doctor about Dexedrine, because it is often better for people with anxiety.

I was put on 10mg, twice a day, and it was amazing! No rebound, and an instantaneous effect! I had no appetite for three weeks, which wasn't ideal as I tend to forget to eat when I DO get hungry, but aside from that, I loved it. (I also lost about ten pounds, which was a great bonus.)

I stayed on that dose for about six months, then went to talk to my doctor about the problems I was having with getting myself to go to bed. People experienced with having ADHD know that there's this thing called inertia that makes it so we can't change activities. Well, that was happening really badly for a while. The only problem was, the doctor decided that the Dexedrine must be keeping me up, and he switched my medication! (What would have been better was giving me a 5mg dose for after work, to keep the medication in my system until bed time.)

So I was taking 36mg Strattera, once a day. It was okay, but really didn't help me at all. I actually found myself having a difficult time understanding things I read (not good for a consummate reader whose reading comprehension has always been above-average) and making really weird typos (such as typing 'the' as 'eht' and other really weird mistakes that happened both between hands and within the same hand, and I often spelled words completely backwards that were longer than 'the'). Still, I stuck with it for six months.

The day after my 30 birthday, I went to the psychologist again and talked to her about the Strattera. She started to write a note to my doctor about getting me back on Dexedrine with extra 5mg doses, but then decided to have me do a quick assessment for depression. I scored very close to the point where I would have been involuntarily committed due to the severity of my depression.

So, off to the doctor I went, note in hand. Except the note said I needed an antidepressant and no more Strattera. I had to wean off the Strattera, and then I started taking 150mg Wellbutrin, once a day.

Wellbutrin was HELL for me. I spent a week working half-days because I had to be at work for some of the time, but I felt hungry and nauseous ALL THE TIME, and I only felt semi-okay if I was lying flat on my back. The doctor took me off the Wellbutrin pretty quickly and put me on Cipralex instead (it's the Canadian version of Lexapro).

I took Cipralex from October 2006 until May 2008, and was on Dexedrine again for most of 2007. In May I weaned myself off the Cipralex, and I have been med-free ever since. I currently take St John's Wort to help keep my mood stable and check my anxiety.

While I was dealing with all the medication changes, I was also in counseling. I had started it before I got assessed, and was doing a Women's Self-Esteem group at the time. That was very helpful. I stopped counseling in the spring or summer of 2006, I forget which.

So, what do I do now?

I have had a Palm Z22 since the fall of 2005. I use it to keep track of my schedule and my to-do list. I set alarms to remind me to do some things - the alarm serves as a trigger to change activities. I also set an alarm for appointments that goes off an hour and a half before I need to be somewhere, because it takes me about an hour to get out of the house, so that gives me half an hour to get where I'm going.

I have methods for doing things - routines that keep me on track. The structure of my routines helps me manage my ADHD symptoms. The only problem with that is that when my routines get disrupted, I get really flustered and anxious, and then I can end up immobilized.

I used the medication, when I was taking it, to help me focus while I learned the skills I needed in order to manage my time and my life in a more effective manner. Things aren't perfect, but they are much better now than they were when I was trying to get by using anxiety to compensate for my problems.

I'm not anti-medication, either. If I decided I needed more focus, I would go back on Dexedrine without a worry. But I know that I don't need it, so I don't bother. I think that if you can use medication the way I did, to help you focus while you learn the skills you need, and then you are able to stop using it, that's great! I am also very aware, however, that a lot of people simply aren't able to stop taking the medication. It's different for everyone, and we all need to do what makes the most sense for us.

We are moving...

It was bound to happen sooner or later. My boyfriend, with whom I have been living for just over a year, has gotten a job in his field. Unfortunately, taking this job necessitates a move from Calgary to Saskatoon.

He leaves for S'toon on Friday (February 20), as the company he will be working for wants him to start on February 27, and he needs to have time to look at places to live and (hopefully) find a good one for us. I will follow at the end of March, cat and guinea pigs in tow.

I hope you all enjoy reading over the next six weeks, as I attempt to remain organized enough to actually pack an entire house by myself!