For the first time in 28 years

I have not bought a Valentine’s present for my husband. I am divorcing him.

Disabilities can change how the processes of falling in love, joining, living together, loving together, and separating happen.

For most disabled people, their disabilities affect how others perceive them as even being interested or capable to find love or sex. (WTF?!)

For many disabled people, their disabilities can even change whether or not others afford them even the opportunities to find love or sex. (Again, WTF?!)

Although my husband and I both have disabilities that have changed how we are employed, communicate with each other and others, parent our children, or even sleep together (literally and figuratively), the divorce had nothing to do with our disabilities.  It’s just about the usual sorts of moral failings that can lead to divorce (even after the sensible year of counselling to assay changes).

Because in the end, love and sex do not happen because people are able or disabled.  They happen because all people are people.  And when love and sex quit, they happen because all people are people.  Just people.  Like everyone else.

This post is (slightly belated) part of Dave Hingsburger’s “Sexy Bloggers” blog carnival on disabilities and love/sexuality, over at his blog, Chewing the Fat.

4 Stages You Don’t Have to Go Through

A recent article landed in my Google news aggregater, “Child’s Autism Diagnosis: 4 Stages You Will Go Through”.  Unfortunately, for all of its cheery helpfulness, it still manages to perpetuate some common stereotypes and misconceptions about disabilities:

When you hear that your child has been diagnosed with autism, the worst thoughts come to your mind. You can feel scared, lonely and overwhelmed. All of these feelings are natural when dealing with a new situation, but it doesn’t have to be terrifying.

Seriously.  The author assumes that the experience of getting a diagnosis is automatically horrifying; the first two sentence are loaded with negative words: worst, scared, lonely, overwhelmed, terrifying. Parents may feel these things at times, and for any number of things, including the sleep-deprivation of newborn care, or even dropping your child off for the first day of preschool or Kindergarten and experiencing the fallout of separation anxiety.  But the process of receiving a diagnosis is described like slogging through of an abyss of despair, with the “4 Stages” listed as 1.Denial, 2.Anger, 3.Grief, 4.Acceptance.

A problem with riffing on these “stages of loss” (familiar to anyone who has taken Psych 101), is that although there is evidence that many people do experience such upon receiving various diagnoses, the very presence of articles such as this may serve to reinforce the despair as much as they seek to lighten it.

How so?  Firstly, many people in various support industries related to disability (including educational and social work realms) are taught that Read the rest of this entry »

“For no reason”

(Coffee-spew warning)

“I don’t know; he just started biting the other kid for no reason. But you know, children-with-autism just do those things.”

“We were just going over the lesson when alla-sudden she just BLEW UP for no reason, and started cussing and calling me an F-ing B and threw her folder papers all over and stormed out of the room!”

“I don’t know what’s wrong with this kid. He’ll just pitch an absolute FIT. We tried to restrain him but then he starting kicking the para and screaming and banging his head on the floor. Honestly, he does. It’s awful, believe me. He’s just uncontrollable — if you want, we can set him off and you’ll see what I mean!”

These are re-created quotes, not verbatim from documentation. But I’m sure you get the idea. (The behavior specialist was naturally horrified Read the rest of this entry »

A Most Dangerous Question

Once Upon A Time…

I had a great counsellor. That sort that gives you unconditional positive regard, and listens to what you’re actually saying (instead of what they’re expecting), and who also asked especially good questions. Some of the questions were of the Zen-master category of counselling, the sort that jog you from your everyday running, smacking palm to forehead and saying, “OH!” or else stopped you short because you had been doing something totally irrational and then had it pointed out to you when you were at a point to heed such. Other questions were more like planting little seeds, things that seemed innocuous at first but that later proved to be much greater things.

This is the story of the little seed question. It was a very dangerous question, not in the hazardous sense, but in the transformational sense. Read the rest of this entry »

Slices (Episode 1)

The best definition of “poetry” I’ve ever encountered is, “Poetry is life condensed”. In a similar way, cartoons condense a slice of life into just a few panels.

All four of these reflect different aspects of dealing with the social world, from blocking off unwanted interaction to the absurdity of Read the rest of this entry »

International ^DISABLED Women’s Day

Today is International Women’s Day. This year’s theme is: “Ending Impunity for Violence against Women and Girls”

People with disabilities have a variety of difficulties across their lives, not just from the intrinsic problems associated with the disability, but also the handicaps they face socially. Disabled people are much less likely to finish secondary school, even less likely to go on to further education in university, have more difficulties acquiring jobs compared to their equally qualified non-disabled peers, and therefore generally earn less. Around the world, women in general also are much less likely to finish secondary school, even less likely to go on to further education in university, have more difficulties acquiring jobs compared to their equally qualified non-disabled peers, and therefore generally earn even less.

Not surprisingly disabled women fare worse than disabled men. But hey, you don’t have to take my word for it. According to a report by the Independent Living Institute, disabled women:

  • Data referring to the E.U. shows that percentage of employment in men without disability is 76% versus 36% in disabled men. Regarding women, the percentages vary from 55% in non-disabled to 25% in disabled women.
  • Studies done on specific groups (autistic, for example) show that they are more inclined to remain in institutions for longer periods of time than men.
  • There are a lot of barriers that make access to birth control and family planning very difficult, such as physical barriers, communication barriers etc.
  • In hospitals disabled women are used as models for trainee doctors, without previously asking them for their permission. Videos and slides are taken of disabled women to be used as teaching aids without any control over their use.
  • There are permanent debates on the role women are supposed to play, and that assigned to disabled persons. As a result, while women in general are pressured by society to motherhood, disabled women are forced into not having children, and this many times leads to unauthorised sterilisation, or denial of adoption on the basis of the “incapacity of the mother” to take care of them adequately.

In theme with this year’s International Women’s Day, there’s also the issue of violence against women. Again, women who are disabled fare worse off than those who are not. Furthermore, it is even more difficult for women with disabilities to recognise, prevent or stop such problems.

The report goes on to describe the various kinds of violence that happen to women with disabilities. These are described as Active Violence (physical abuse, emotional abuse, sexual abuse, economic abuse) and Passive Violence (physical neglect, emotional neglect). These can be manifested in the following ways:

Physical abuse:
Any direct or indirect action that can damage the life, welfare or health of disabled women, provoking pain, unnecessary suffering or health deficiency.
Manifestations:
* Aggressions in different parts of the body
* Unjustified administration of drugs.
* Restrictions of mobility.
Alert Signs:
* To be found in sedative or nervous conditions.
* Motor dysfunction not due to their disability.
* Signs of physical violence: marks in wrists and ankles, fractures, bites, internal damages, burns, etc.
* Detriment in their remains of physical capacity.

Emotional abuse:
Behaviour model that results from damage to the welfare and emotional balance of a disabled woman.
Manifestations:
* Isolation, prohibiting or limiting the access to means of communication (phone, mail..), to information and to keep in contact with other relatives and neighbours.
* Oral cruelty, by means of insults, constant criticism, making fun of their body, punishments in the presence of others.
* Over protection.
* Speaking, deciding or giving opinions in her name.
* Intimidation, and /or emotional blackmail.
Alert Signs:
* Depression.
* Communication and interrelation difficulties.
* Insecurity, and low self-esteem.

Sexual abuse:
Actions that are a sexual aggression towards disabled women, and can produce physical or emotional harm.
Manifestations:
* Rape.
* Sexual vexation or humiliation.
Alert Signs:
* Marks or/and injuries in genitals.
* Fear to relate with certain people.
* Undesired pregnancies.
* Venereal diseases.

Economical abuse:
Actions that pursue the loss of control and rights on properties, money or family shared inheritances. The use of the image of a disabled woman against her will, to gain money for third persons, is also considered economic abuse.
Manifestations:
* The use of disabled girls or women in mendacity.
* Employing disabled women in poorly paid jobs usually linked to clandestine employment.
* Limiting the access to information and management of personal economy.
* The use of money as a sanction.
* The family denies the access to external economic resources (jobs, grants..).
Alert Signs:
* Depending too much on others.
* Little expectations regarding herself and her personal or professional projection.

Physical neglect:
It is understood as such, the denial or privation of the basic aspects to keep the body in good shape, in relation with health, hygiene and image.
Manifestations:
* Negligence in feeding.
* Personal carelessness.
* Neglecting hygienic measures.
* Lack of supervision.
Alert Signs:
* Malnutrition.
* Frequent illnesses not caused by disability.
* Inadequate cloths regarding sex, climate, and the persons’ handicaps.
* Dirty clothes.
* Long periods of time without supervision.
* Physical problems worsen due to lack of treatment.

Emotional neglect:

Those actions that deny or deprive attention, consideration and respect towards disabled women.
Manifestations:
* Ignoring their existence.
* Giving no value to their opinion.
* Feeling ashamed about them.
Alert Signs:
* Lack of interaction.
* No motivation concerning their personal development.
* Scarce or no participation in family or social activities.

The study came up with the following conclusions:

  • Many disabled women see themselves as subjects of maltreatment and abuse, while society ignores the problem.
  • Many disabled women do not see themselves subjects of violence, because they consider these situations habitual in their lives and associated with disability.
  • Disability is a risk factor when suffering abuse and maltreatment situations, which added to the fact of being a woman, increases the risk to higher rates than those of the violence suffered by women in general.
  • Women with sensorial, learning, and communication problems, are more likely to suffer abuse and violence.
  • Not having the traditional female roles assigned contributes to lower self-esteem and increases vulnerability, elements that favour becoming an object of violence.
  • Violence against disabled women shares common characteristics with the female collective, but has specific characteristics as well.
  • Most professionals in charge of counselling and interventions in maltreatment to women ignore that many disabled women are in the same situation. Either because information does not reach them, or because they do not typify as violent acts those they believe associated to disability.
  • Depending on others to cope in daily life increases the risk of being objects of violent actions. This risk is believed lower when personal assistance is given with former professional training and psychological aptitude.
  • Violence against disabled women has more to do with the fact it is considered an extenuating circumstance that these actions are perpetrated against “a faulty being”, than on using a woman’s body as a demonstration of power and control.

The report goes on to describe specific details from several countries. Near the end, the authors describe some of the difficulties that disabled women face when trying to extricate themselves from abusive situations:

It is extremely difficult for any abused woman to leave a situation of abuse. A woman is hit by a husband or a partner an average of 35 times before she calls the police. Battering undermines self-esteem and can make a woman feel she is somehow responsible for her own abuse. For a woman with a disability, this situation is even more difficult. She may be dependent on her abuser for affection, communication and financial, physical and medical support. If she reports the abuse, she may risk poverty and loss of housing and support. She may fear she will not be heard or believed is she speaks out. She may face further violence, institutionalisation, or loss of her children if she seeks help. She may not have access to information about existing support services for victims of violence. Even if she has this information, many sources of support may not be accessible. She may not be able to contact the police or women’s shelters because they do not have communication devices as telecommunication devices for the deaf. She may not be able to physically leave her situation because of a lack of accessible transportation. Her lack of options may leave her feeling so powerless and despairing that suicide seems the only viable choice. And if she seeks help in dealing with suicidal thoughts or attempts, she is unlikely to find counselling which takes account of her own reality. And so she is left isolated and possibly suicidal.

Just as the problems are multifaceted, so are the solutions. The report recommends:

  • Abusive behaviour needs to be acknowledged as a serious social and in some cases criminal problem, rather than being considered a private matter.
  • Protocols need to be developed for institutions to screen potential employees and volunteers.
  • Protocols need to be developed to address the abuse that occurs in institutional settings.
  • Community living alternatives need to be made available for women with disabilities.
  • Courses need to be made accessible and available to women with disabilities (in self-defence, assertiveness training, and sex education).
  • Appropriate suicide consoling which meets the special needs of women with disabilities needs to be made available.
  • Transition houses and other existing support services need to be made accessible, and frontline workers in shelter facilities need to be sensitised to the needs of women with disabilities.
  • Women with disabilities need to be hired to provide this training and to work in these centres and
  • Women in all communities need to work together develop a co-ordinated approach to dealing with the abuse of all women.

Whining From Another Hysterical Female

Don’t get me wrong — I’ve actually had good results with most of the professionals whom I have seen. It would be rather a fallacy to broadwash a whole bunch of specialists on account of a few fools. But boy, when you run into an fool, it’s usually a doozy!

It’s been a long few years getting various difficulties sorted out and identified. Over a year ago I saw someone who was touted at being an expert on learning disabilities, to investigate ongoing scholastic difficulties and possible auditory processing difficulties.

Well, I saw Dr S. (a PhD, not physician) when I was otherwise free from the bulk of my work and school activities, as at the time I’d been having a number of health problems, including insomnia, migraines, worse tics and stuttering, hyperacusis & tinnitus et cetera.

I brought in with me documentation including previous test results, transcripts, and descriptions of my difficulties. This was because I can often get tangled up and forget stuff when trying to explain things, especially to doctors. (Hey, I’m an organism capable of learning — over time I’ve realised that remembering stuff is a problem, so now I take in a list or hand over a page of notes. My new primary physician does great with this, because in the couple of minutes it takes her to read a few paragraphs, we can fast-forward through a lot of rote questions, without omissions.)

Dr S. had me fill out a couple of online tests, and then had someone else administer some more tests to me. Oddly, one of the tests he gave me was for ADHD, for which a coöperating team of a psychologist and psychiatrist had already evaluated me. In fact, he said I had no ADHD and no real problems, except a little figure-ground discrimination hearing things in noisy environments. He had no recommendations, except that I needed to see a psychiatrist for psychosomative disorder.

Well, hell. Was I bordering on depression? Yes, and I knew that and was working actively against that — half a year of chronic sleep-deprivation and pain will do that to a person. Was I having difficulties with my husband? Yes, my health problems were requiring me to take a semester off school and work, and he was wanting to know “when I was going to be a productive member of society”. I already knew about these things, and had explained to Dr S. that I was working to deal with them. But that wasn’t why I was seeing Dr S. — I was trying to address learning and hearing comprehension problems. I even paid a few hundred dollars out of pocket for all that.

There’s a big problem here, and it’s not mine. Nor am I the only one with it.

The word “psychosomatic” has gotten warped or twisted. It literally acknowledges the interdependency and functionality of brain/mind and body, but now has come to mean that problems are “all in your head”, as in imaginary and/ or self-inflicted.

They used to call women “hysterical” and thought it due to having a uterus that “wandered around the body”. Holy cows. Obviously I’m not hysterical. (Hell, I don’t even have my uterus or ovaries any more, due to cysts and endometriosis.) So now they say that women who have problems have “psychosomative disorders”.

The issues with my husband were not seen as his difficulties in accepting my disabilities, but as evidence of my mental disorder.

The near-depression I was facing was not from months of chronic insomnia and pain, but rather caused by my mental illness.

The documentation I had brought with me to aid the man in his understanding of my problems was not data, but symptoms of my mental illness.

I was seen as “attention-seeking” rather than as solution-seeking.

Shit like that can drive a person nutz.

The good news from all that was that I got a referral to a CAPD specialist who said that Yes, I definitely do have such problems, and could even recommend some concrete ways of dealing with the problem and gave me documentation for such. But it makes me wonder, if Dr S. couldn’t really diagnose such, why did he put me through tests for APD, and tests I didn’t need for ADHD?

Has it ever occurred to clinicians that many of their clients don’t exhibit stress symptoms due to having psychosomative disorders, but rather than having various (unacknowledged) disabilities will make a person stressed?

It’s all ass-backwards. Shit like that can drive a person nutz.

Practicing

My phone rings, and I am scheduling with one of my new tutees. I am meeting with this particular person less for the more common “content” tutoring (explaining concepts in Biology, or editing strategies in Composition) than I am for “process” tutoring: figuring out what kinds or organsational methods will work best for her, and helping her figure out how she can solve future problems on her own.

I turn on my calendar program, as yet mostly comprised of blank squares for this month. “We can meet once a week for 90 minutes, or break that up and meet twice a week.”

“Well, what do other people do?” she asks, a tone of uncertainty in her voice. I wonder if the uncertainty stems from the scheduling logistics, from the process of getting tutoring, or some other element in her life. Maybe it’s just being tired from what she’d described as getting in late last night from a trip.

“It doesn’t matter what most other people do; what’s important is what you need,” I assert.

There is a pause while she digests this thought. Perhaps it’s a new and dangerous idea, where one’s needs outweigh having to do what everyone else does.

I explain the options a bit, “Once a week might work better because of time constraints, or twice a week might work better so you can review stuff and go to class and then review stuff again. We can also try it one way, and then as things change over the semester, try it the other way and see if that works better. I’m flexible. It’s not carved in stone.”

Perhaps the uncertainty comes from not knowing what her needs will be. That kind of prescience comes from experience, of which freshmen and sophomores have less.

This is, I have found, one of the paralyzing concepts facing people who don’t have as much experience in making decisions about their own lives. There is this myth that you should know what you’ll need in the future, and have to make The Best, Correct Decision – Right Now, and that once made, you’re stuck with it forever. That somehow there’s not enough grace in the world to change things and adapt them to your own changing needs, or your changing understanding of your needs. Worse, that if you make the Wrong Decision, or even a Less Useful Decision, then you have screwed up and this reflects poorly upon your character and your intelligence, rather than the fact that wisdom is a pathway trod throughout life.

We all want to do the right thing. We all need to learn how to make decisions about our lives and to advocate for ourselves. Doing that takes practice. Practice means that teens, young adults, and even older adults will need to have the opportunity to make mistakes along the way, learn from them, and then try again.

Practice means that one has a certain level of support system so we don’t fail to the point of endangerment. The baby learning to toddle is given a safe environment, a certain level of freedom, and encouragement. They are also the opportunity to fall down BUMF! on their diaper-padded butt time and again, to get up and cruise along the furniture until comfortable enough to strike out independently across the floor, and then eventually out the door into the big world.

What we don’t need is some people trying to keep us down by using the occasional failure as “proof” that a person is unable to be self-sufficient, and therefore must be bounded and trapped in “care” situations. As Carol Hanisch said decades ago (regarding the feminist movement), “We’re messed-over, not messed-up.”

My tutees are not the only ones practicing. I’m a practitioner because I’m also practicing. After a tutoring session I reflect upon what transpired to plan for next time. Sometimes I find that I must take different approaches than those traditionally recommended. This isn’t surprising, because the very reason I’m with these students in the first place is because the “usual methods” are often not adequate to their needs.

What this does is require me to come up with novel ways of applying what I know about the person and their situation. This means that for the student, the method I’m proposing has to in some way be partially based upon something they are already familiar with, so it will make sense to them, and so they can begin from a point of comfort derived from familiarity. Then we can take the method and do something different with it.

Much of doing this is an interactive process where I am providing the medium for the student to explore what they need, and how they can achieve that for their self. The end point is to help them learn how to problem-solve new kinds of situations, and thus eventually make myself “unemployed”.

Good Counseling, Bad Counseling

Good counseling is kind of like good art, or pornography:  hard to define, but we know it when we see it.

Sadly, a lot of people have more experience with bad counseling or psych care. Bad counseling (Bc) tells clients what their problems are and what the counselor is going to do to or for them to solve that.  At its worst, Bc is disempowering, denies self-advocacy, self-understanding, and self-help, and turns help into a passive process for the client.

The problem with many people working in the “helping professions” is how “helping” is viewed. (Here we’re talking about helping professions as counseling and social work, as opposed to personal attendant staff, which may necessarily be long-term assistance.)  Bad helping is about ensuring the status quo of the client as the dependent recipient of help given by the service provider. Good helping is about making the counselor “unemployed” as it were, of being a temporary resource to the client, rather than a permanent fixture that is necessary to keep a “broken” person working.

Good counseling (Gc) helps the client to determine problems they are facing, and what they need to solve them, and how they can acquire the tools needed to do so.  The counselor works with a person, not for them or to them.  It’s about respecting the client, and presuming competency on the client’s part, including the client as the local expert on their self.

In other words, Gc is empowering. The client needs to have their own power to make decisions.  They need to have resources and information made available to them so they can make their own choices.  Those choices need to be real choices, not dilemmas sold as choices. People need to feel like they are masters of their own fate, and also be able to understand the boundaries of what things they can change.

Clients also need to learn how to be able to reframe how they understand things in a more constructive manner, so they can take the things learned and be able to continue to help themselves later on.  A child’s job is to play, learn and grow, and so is an adult’s.  We all need to continue to learn new skills and approaches throughout our lives as our situations change, and as our abilities to do things also change.  There is no one place in life where one is done learning; it’s an ongoing, lifelong process.  To be able to do this the client needs education, not just in the form of information, but also in the process of making thoughtful decisions with this kind of information.

But to do all that the counselor has to be able to figure out – with the client – not just what the problems are, but also what the client thinks is important:  the things they need to solve, or skills they need to acquire. If something is important to the client, then it’s important!  The counselor should address the subject with them.  People need to be able to make decisions about things that are important to them in their lives.  That’s the inherent difference between Bc and Gc: telling people versus asking them.  A lot of what people need is attentive listening and being taken seriously (for a change).

To be hopeful for a positive outcome, a person needs to feel that they can make a change in their lives, and do so from their own power. The client should then be able to take that sense of power that is created from beneficial change, and be able to share it with others in their communities – the personal empowerment becomes social.  Part of that social empowerment comes from the client being able to earn the respect of others and to be seen as a competent person, rather than as someone stigmatized for being “damaged”.

To do these things, the counselor should be a tool for the client.

And boy is that a change in the power paradigm!

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