Tag Archives: Activism

Everyone Can Be a Hero

One of the prompts for Friday Reflection this week is to write about someone who is a hero to me and why. I see a hero as someone who is very inspiring to me, whom I look up to. I discussed this with the institution pastor last year, when they did a summer series at church on inspiring people. He chose Mahatma Ghandi.

I see many people as inspiring. The most well-known person I mentioned to the pastor – but he’d never heard of her -, was Helen Keller. You’ve probably heard about her “miraculously” learning to use tactile sign language through the work of Anne Sullivan. Keller is also relatively well-known for having graduated college while being deafblind and a woman, both of which put her at a disadvantage in the patriarchal society of her time. However, you probably didn’t know that Helen Keller was a political activist, taking an important position in women’s suffrage and socialism. She was also one of the founders of the American Civil Liberties Union.

However, you don’t have to have overcome your disadvantages in some kind of miraculous way to be inspiring. In fact, most people only see Keller as having “overcome” her deafblindness and overlook her activism.

There are other disabled people I consider heroes. They however don’t do anything that makes them well-known and many have not “overcome” their disabiities at all. For example, I mentioned Cal Montgomery, author of Critic of the Dawn to my pastor. I don’t know her personally and she isn’t a public figure, so I cannot be sure that how I see her is correct. I do not know more about her than what I see through her writing. However, I can tell that she has determination. I do not admire her for having somehow proven her capacity to get out of an institution by denying her disabilities, which she may’ve had to do. Rather, I admire her for writing about human and civil rights for people judged to be too severely disabled to have these rights.

There are undoubtedly many other disability rights heroes in the world. Some are well-known in their particular disability communities. Others are not. What they have in common is not the “miracle” of their “overcoming” their disabilities, which Keller is publicly known for. Rather, they live their lives not just in spite of but also with their disabilities.

Living your life, in this sense, is a political statement. This applies particularly in the disability community, but it generally applies to everyone. People don’t need to be the first or the best or the greatest to be heroes. Everyone can be a hero in some ways.

Reflections From Me

“You Can’t Be in Society Like This.” #BADD2015

Today, May 1, is Blogging Against Disablism Day. I have been participating in this yearly event almost every year since 2007, though some of my posts are no longer online. Usually, I had a good idea of what I was going to write about well in advance. Not now. Having been busy with the #AtoZChallenge until yesterday, I didn’t have lots of time to think up a theme.

I am therefore going to start by giving a little background on my situation and will see where this goes. I am institutionalized and have been since 2007. I was living on my own in 2007 when I broke down mentally and had to be taken to the psychiatric hospital. Though the psychiatrist who admitted me did say we would need to find me a suited supported housing accommodation, she probably wouldn’t have predicted this to take long, let alone as long as it did and does take.

One problem which I encountered was that the staff who had been supporting me while living independently, particularly the team manager, were unwilling to have me go into supported housing at their organization. Their reason was the fact that I had meltdowns. Though I did not become physically aggressive towards people, I did scream and occasionally throw objects. The team manager at one point said: “You can”t be in society like this.”

Well, let me focus on this for my #BADD2015 post. You can’t be in society like this. What? You can’t be in society like this.

I am an informal patient. Always have been. With one exception during those early months on the accute ward, no-one has ever threatened involuntary commitment. There just wasn’t enough ground for it. Yet I couldn’t leave the institution because the supported housing agency decided that “you can’t be like this in society”.

I have become much more moderate on institutionalization over the years. I used to be firmly anti-institutionalization. Not anymore. It’s probably because I just don’t have the spoons to fight a system that won’t change for the better, and that is in fact moving towards more institutionalizations for severely disabled people.

The Long-Term Care Act, which regulates 24-hour care for the most vulnerable of disabled people (which for now includes me), says that people need to get care in an institution. There are exceptions, where a person can get the “full package at home”, but there are very strict guidelines for this.

I have always promoted good, community-based care. All the while, I’m still institutionalized, and I’ve become weary of advocating for my right to live in the community. After all, if no agency wants to support me, I’ll need plenty of spoons to fight them.

What annoys me more than people’s refusal to provide me with care, is the general idea behind the comment that you can’t be in society like this. I mean, it’s still discrimination if a care provider refuses a client who isn’t violent towards them, but it is less striking than to say that this person can’t be in society like this at all. This is like saying that this person is an outlaw.

The bottom line is no care provider has been found yet that is willing to take me on. I just yesterday had a meeting with a local care officer who decides on funding for care under the Community Assistance Act. The meeting went better than I expected. Because I’m now married, I’m planning on living with my husband rather than in supported housing. Then again, this team manager led the community care team, albeit in my old city. The blanket statement that you can’t be in society like this, presumably applies to community care too. Let’s just hope that the care agencies in my current town are less ableist.

“You Are Not Like My Child” #AtoZChallenge

Welcome to day 25 in the A to Z Challenge on autism. Wow, we’re almost done! Today, I discuss a statement often made by parents of “low-functioning” autistic children towards adults with autism: “You are not like my child.”

This statement is often used to discredit adults with autism who want to advocate against a cure or who want to advise parents against certain treatmets for autism. In a way, oof course, the parents are right, in that no-one is exactly like their child (not even that child’s hypotehtical identical twin).. Of course, parents have the right to make decisions about their child’s health, so it isn’t like an adult with autism has the right to make that decision (unless the adult happens to be the parent of an autistic child too).

However, this usually isn’t about adults trying to make decisions for other people’s autistic children. I for one recognize parents’ decision-making rights and I have never directly intervened in a parent’s decisions that I did not agree with. However, the parents in this situation often use these words to discredit autistic adults trying to advocate for themselves and their right to remain the best autistic people they can be.

I, in fact, have had people tell me that, unless I agreed that I was nothing like their autistic child, I should get a fad treatment to get cured of my autism. This disrespects adults’ rights to make medical decisions for themselves.

Another aspect in which parents and adults with autism have opposite interests, and in which this statement is often used, is representation of autistic adults in organizations like Autism Speaks and the Autim Society of America. It is a fact that thse and other such organizations have few or no autistic adults on the board of directors. Autism Speaks used to have John Elder Robison as a poster puppet, but that’s about it. In few other disability communities do parents say that adults with said disability cannot represent themselves, but in the autism community, it is a common idea. When Ari Ne’eman was eelect into the National Organization on Disability, parents everywhere protested. Now I for one do not agree with everything Ne’eman says and I do feel he’s a bit too inexperienced to serve on a government advisory board. However, I do not see why, just because he isn’t a parent, he can’t be on the board.

Let’s face it: we are not like your child. We are adults. However, autistic adults at one point were autistic children, and many had the same problems today’s autistic children are facing. Parents could learn from how we coped.

I do not say that there are no autistic children with an intellectual disability or who are non-verbal, but there are autistic adults with these challenges too. Also, if an autistic adult appears to function well now, it doesn’t mean they functioned as well as a child – or even that they function as well in real life now.

I consider myself a moderate mama on many debatable autism issues, but one thing I can’t stand is being silenced for being disabled. This is exactly what the “You are not like my child” crowd do.

Vaccines and Autism: Stop Beating a Dead Horse #AtoZChallenge

Welcome to day 22 in the A to Z Challenge on autism. Today, I focus on a very controversial subjects: do vaccines cause autism?

The answer to this question could be very short: no. The Autism Science Foundation has compiled an exhaustive list of studies on the subject, which investigate pretty much every aspect of vaccines that the anti-vaccine community has blamed for autism, including whether vaccinated children are generally more likely to be autistic than non-vaccinated children. The anti-vaccine crowd have consistently demanded such a population-based study, but several were published and they still believe vaccines cause autism.

The problem is a little more complicated in one tiny aspect, and this is the fact that the general autism community believes that autism is purely genetic. This has not been proven, and the anti-vaccine community has a point to suggest environmental factors in general could be risk factors for autism.

What if avoidable environmental factors, such as vaccines, did cause autism in genetically vulnerable children? After all, we know that vaccines and other environmental factors carry risks. It is easy to say that no more vaccinated children are autistic than non-vaccinated children, for example, but what if a multitude of environmental factors, including vaccines, could contribute to autism? As a parent, after all, you’re not dealing with a population of vaccinated and unvaccinated children; you are dealing with your own child.

You have to weigh risks. With vaccines, however, the problem is you run the risk of losing herd immunity if you and a lot of parents are not vaccinating. Herd immunity is the condition in which a disease has been extinguished due to a large part of the population being immunized to it. This is tough, because you are not dealing with the entire population as I said; you are dealing with your child. It is not like, if you don’t vaccinate, they are guaranteed to die of the disease the vaccine protects against, but another child just might. In this sense, while I advocate parents’ right to make decisions about their children’s health, I urge parents to be responsible.

Another problem is that the vaccine controversy hinders research into other environmental and genetic factors that might cause autism. For example, many people using biomedical interventions for autism find that their child has (or is thought to have) a lot of things wrong with them, including for example food intolerances. What if the key to finding the cause of autism lay in fact with such other, often trivialized, biological factors? It is understandable that parents who are part of the pro-biomed community are discredited, because they keep insisting vaccines cause autism in spite of overwheming evidence to the contrary.

Research is not advanced if people advocating for it keep asking the same questions that have been answered a million times. If you truly want to prevent autism (which I for one don’t, but many parents do), support research into a variety of enviornmental and genetic risk factors and stop beating a dead horse.

Sensitivity Is a Good Thing

“You are too sensitive.” I and other people with mental health problems hear it all the time. I was raised with the idea that I should be more laid-back. Now I can see that being laid-back is good, but when it’s used to mean not to react to wrongs in our environment, it’s not so good.

Over at Pride in Madness, there’s a post on being sensitive. Its main point is that sensitivity used to be a positive trait. People who care about the world around them, used to be described as sensitive. Now, it’s used to mean “overreactive”. We easily forget that people who fought for the rights we now have, used to be seen as sensitive and overreactive, too. Women’s rights activists were diagnosed with “hysteria” as a way to silence them. This is a way for the dominantly male, White, heterosexual, non-disabled culture to keep its members in a privileged position. And this is exactly why we need sensitive people.

Everyone is privileged in some way. I remember last year considering the Black people protesting the St. Nicholas celebration in the Netherlands because of its association with Black slaves, overly sensitive. That was a mistake. I don’t promise I will never make this mistake again, and so I can see why men make the mistake of calling women overly sensitive and non0disabled people make the mistake of calling the disabled overly sensitive. This is, however, exactly why we need reminders from people like the author of Pride in Madness that sensitivity is a good thing, and that we need people who are sensitive to the wrongs in the world in order to make them rihgt.

Breastfeeding in Public: It’s a Women’s Right

I follow a fair number of Mom bloggers, both through my feed reader and on Twitter. I also participate in a number of online blog and Twitter events. Through one, I got to know Jen from Liv, Laugh, Love. I found her through a Twitter follow thread on Facebook, and we were asked to engage with the particcipating tweeps. This could be as simple as retweeting some of their tweets, which I did with some, but it could also be starting real conversation. Jen’s first tweet I came across mentioned her blog post on public breastfeeding. Jen is a passionate breastfeeding advocate. I am not, and yet I wholeheartedly agree with her point in this post.

I don’t honestly think that “breast is best”. For some, it is, but other mothers cannot breastfeed due to taking certain medications, not being able to nurse a baby for whatever reason, etc. Still others choose not to breastfeed, and that’s fine with me too. There is probably research backing both sides of the breastfeeding/formula debate.

That being said, this post is about whether women are allowed to breastfeed in public, and my answer is a resounding “YES”. It’s not about whether breast milk is better than formula. It’s about whether women should be allowed to expose their boobs. And I would say as general rule they should.

I can see why exposure of some body parts would not be allowed. Genitalia, notably. Still, this is more to do with the nature of the exposure than the nature of the body part. If a person exposes their genitalia, it’s usually to shock other people. When a woman shoves her breasts in someone’s face so to speak, same. That is sexual harassment. However, breastfeeding in public isn’t intended to shock others. It merely serves the purpose of breastfeeding.

Also, of course, men expose their chests all the time, but that’s not a problem because they don’t have breasts, I suppose. This may sound logical, but in reality, women are just held to a higher standard of cover-up than men. A fomrer fellow patient was one day caught wearing only underwear and a T-shirt. The others commented that, had she been male, it would’ve been acceptable. Why? I believe male genitalia get more exposed when covered only by underwear than female genitalia. The only thing I can make of it is that women are not supposed to expose themselves, while men can go pretty far before their self-exposure is seen as indecent.

Pink Is a Color

There’s a lot of pooha against girls wearing pink lately. Apparently, dressing girls in pink is limiting their future success. Blimey. As the author of Parenting Highs and Lows says, pink is a color. No feminist in their right mind would say that having black skin limits people’s future success, even though in our still pretty racist society, it does. And I know you can change what clothes you wear and not what color your skin is, but so what?

In my opinion, firstly, this is holding girls and women accoutnable for the stereotypes created by society. When I was still active in feminist circles, I learned that making the minority feel responsible for defeating society’s steretotypes, is discrimination. Besides, if girls should not wear pink because it limits their future success, this is only perpetuating the idea that girls wearing pink should not be successful. This is ultimately counterproductive.

I haven’t even touched on what it is that girls are being unsuccessful in when they’ve been wearing pink. It is said to be limiting their careers. As if the only successful women are those who have a career outside the home. This is the mostly male, White, able-bodied society’s norm of success, and women’s rights include the right not to conform to this norm. The so-called feminists who are encouraging people to stop dressing girls in pink because it limits their ability to conform to the societal notion of success, are merely perpetuating the stereotypes they’re meaning to defeat.

Now I for one am not a big fan of pink. I never quite liked the color. I also do not agree with the idea that girls should wear pink, or that real girls or boys wear any color or even sort of clothes in particular. That’s stereotypical. People of any gender should be allowed to wear whatever they want, and if that is perceived to limit their ability to do whatever they want in life, that’s discrimination. Blaming the person being discriminated against, is allowing the discrimination to continue.

Autism and Justified Anger

On my autism treatment and acceptance, Autisticook commented by saying that anger in an autistic is often justified. She compared it to the situation where a wheelchiar user gets angry because they are faced with yet another two-step staircase that wasn’t necessary and where nobody thought of installing a ramp. This made me think: are we overpathologizing anger in people with developmental disabilities (and mental illness)? Are we incorrectly assuming that anger is part of the disorder, while it’s just a response to a lack of accommodations? This is obviously not a scientific discussion, as what is a reasonable accommodation depends on your perspective.

I just a few days ago heard about cognitive accessibility, where people accommodate their language, for exxample, for understanding by people with learning difficulties. I’m trying to find an accessible and understandable explanation of this, but can’t seem to find one. What I understan dit to mean, includes for example using simple, straightfoward language. With autistic people, you may need to refrain from using figures of speech, for example.

What if you were dropped in a country where you didn’t speak the language and everyone refused to speak English? Would you get angry? Quite likely you would. Now understand autism as communicating in a different language, too. Is it strange then that the autistic gets angry when you routinely refuse to make an effort to speak their language?

Autism is not just a communication disability. It’s in a way a sensory disability, too. Imagine, again, being in that foreign country and everyone shouting at you for whatever reason. They also randomly shine a flashlight at your eyes for whatever reason. In addition, this country is rich on insects, and they crawl over your body all the time. Would you get frustrated? Sure you would!

We do not medicate wheelchair users for getting frustrated at the umpteenth staircase. You would not want to be put on medication if you were in the aforementioed country. So why do we medicate autistics who are irritable? It’s probably because accommodating them requires a radical paradigm shift in what we always thought access was all about. Is it a more radical shift than the shift towards wheelchiar accessibility? I am not sure.

Family Offered $86K to Take Son out of School, Waive Complaints of Abuse

I don’t normally use trigger warnigns but this post sure requires one for graphic descriptions of abuse.

@mamabegood on Twitter just posted a news story that says that a family was offered $86K to keep their autistic son out of public school. That’s what the title reads. The actual story is much worse and includes abuse at the hands of a teacher.

This story, unfortunately, is not an isolated case. Many children and adults with autism get abused by professionals in whose care they’ve been placed in one respect or another. The details of the abuse in thsi particular story remind me of a lot of “old-school” ABA therapy, where aversives were presumed to be the single most important factor in its success. David Swanson, the young autistic in this story, was force-fed by a teacher because he refused to eat with a metal rather than plastic fork due to oral sensitivity. Now imagine if I forced a sharp object into your mouth. This would sure be considered abuse. If you then vomited and I’d force you to eat your own vomit, that’d make the abuse even worse.

Honestly, even though this news report is generally okay, it’s symptomatic of something I can’t quite pin down that the most focus is put on the money offered to David’s mother to take her son out of school. Is it that abuse of autistics is commonly excused because “they” (autistics) are difficult, aggressive maybe, hard-to-parent often, and many times won’t meet up to the expectations of others? Please, if you’ve made it to this point in my post, let’s join Mama Be Good on Facebook in a moment of silence. Thank you for reading.

Healing Quotes: Maya Angelou on Bitterness and Anger

“Bitterness is like cancer. It eats upon the host. But anger is like fire. It burns it all clean.” – Maya Angelou

I have always liked inspirational quotes, although I am getting a bit weary now that they’re shared on Facebook all over the place without even as much as a personal commetn. I therefore want to write about thsi quote and express how it affects me.

Bitterness and anger are both emotions that come when something happens that we don’t like and that we feel we don’t deserve. But while bitterness is a passive emotion, one that gets people stuck in their feeling of beint treated unfairly, anger is an active emotion. It drives people to actually do something about the injustice done to them or about the consequences of this injustice. An example of this can be seen in Down with Dat’s use of anger to fuel activism.

Anger really isn’t the negative emotion we often think of, the emotion that paralyzes people into being consumed with self-pity. That is bitterness. Bitterness may actually also be like depression (not the clinical kind, but the everyday depression most people experience at times) rather than just anger, and, while we don’t usually choose to be depressed, we can change our train of thought to convert it into anger and action.