This blog will be deleted soon. I’ve transferred all my posts to my other blog, She’s a Bibliophile. Condensing these blogs will help me focus and actually get some writing done. I’m making it my New Year’s resolution to keep up with my blogging.

Thanks everyone! Also, if you want to trade blog links, drop me a line in the comments at She’s a Bibliophile.

Dear People With Invisible Disabilities on Certain Blogs,

I’m tired of your narrative taking over in disability activist spaces or disability dialogue in general. You have a huge privilege in passing. Please be more understanding of when it is cool for you to speak up, and when you just need to sit back and listen.

When you can go around doing your business, hiding your disability from others, choosing when it is safe to come out or not, that is a huge advantage that many of us will never be able to take part in. And I don’t feel comfortable with people with invisible disabilities talking for me or with me about how hard it is when society judges you.  Not when people like me are being put in institutions, being mutilated, being killed, or any other number of atrocious things. I DON’T WANT TO TALK ABOUT INVISIBLE DISABILITY ANYMORE.

Truly frustrated,

ME

A while back, I joined a website for people with disabilities called Disaboom. There was a chat room, message boards, and articles written by PWD, doctors, and carers. While I did make a couple of friends there, it was mostly filled with internet drama and points-of-view that I couldn’t deal with.

In a space that was supposed to be comfortable and safe for PWD, it wasn’t. It certainly wasn’t one for me, being a disabled mixed-race woman.  There were posts by devotees looking for a little action, posts about  “illegal aliens” and any people of color who immigrate to the US, how women were inventing and perpetuating sexism, about Obama only winning because he is black, and more. Of course, there were people who did not think these things (my friends), but we all started to leave as the bigotry grew.  I eventually left.

Even though I would like to forget that whole experience, I did take away two things from it. One is that, besides being with good friends, my boyfriend, and some family, I will probably never feel totally comfortable in any space. This is something I knew before, subconsciously, but I didn’t start to analyze it or think about it until post-Disaboom. At zine fests, I’m usually the only (visibly) disabled person; I mean, at most social events, this is true. But even in spaces with other disabled folk, I am the woman, or the stealth Latina. Or the atheist. Whatever. There’s always something that sets me off from the crowd. I’m used to feeling like I’m on the fringe (and not in a cool, punk-rocky way), so I roll with it. It’s there, it will always be that way, so I deal. My activism is something that I hope will change this, but realistically, it’s beyond just me.

The second thing I took away from Disaboom is that there is a lot of internalized (dis)ableism going around. I know that, when I was younger, I was one of those “I’m not DISABLED like THEM!” people. I guess that’s because the only images of disabled people I’d ever seen were “inspirational” (which I never felt) or “sad” (which I also never felt). I used to go to the Muscular Dystrophy Association parties, and I would be uncomfortable with the attitude that permeated the room. It seemed like everyone there was so obsessed with their disability and being poster children and finding a cure to FIX them, and I wasn’t raised like that. I was raised in a home where my disability was rarely a topic of conversation, and all my friends were able-bodied. It was alien to me to think of myself as something that needed to be fixed. But this is what disability was to me because this is what I was exposed to.

It wasn’t until I reached adulthood that I started to view disability as something that wasn’t inherently bad. I learned more about disability rights and activism – the internet and books opened that world for me – and I began using “disabled” as a word to describe myself. I knew there were people out there who were fighting for rights and getting together to do protests, whether they were in the streets or online through blogs.

So, when I joined Disaboom, I was at that point in my life – accepting and appreciating who I am. But this website wasn’t like that. Even the people with disabilities talking about how they weren’t disabled (sound familiar?), but differently-abled, how they would never be able to accomplish anything in life and they needed to be fixed or cured. I wanted to tell them, and tried to tell them,  that, no, you don’t need to be fixed – society needs to be fixed! Your disability isn’t the problem, it’s society’s inability to include us in everyday life!

While I would definitely want parts of my disability to go away (stomach issues, ugh!), and while there are disabilities that many people want a cure for (and rightfully so), I don’t like to see “finding a cure” as the biggest topic in a disability community or message board. It just reeks of ableism – it’s always the disabled person who has to change, and not the community around them, right? And when your community (I’m speaking specifically about the Muscular Dystrophy Association) is ALL about finding a cure and pitying you, you just want that attitude to go away.

It’s been a little over a year since history was made, and Barack Obama became the first African American person to be elected the president of the United States. I’m sure that along his arduous journey to get to the place he’s in now, he heard far more than his share of naysayers and doubters insisting that he, or anyone else of color for that matter, had no chance of ever occupying the role in which he holds.

Actually, I see similarities between him and myself.  Like him, I’ve faced unfair criticism at times in large part because I was a different candidate from the norm, and in similar fashion about the color of his skin, the criticism stemmed from the misperceptions that people had about my disability, and the way people automatically assume that someone with a disability is incapable of being in charge or making decisions.

The notion that all disabled people have mental impairments transcends all cultures and ethnic groups on this planet.  Every country in the world has some form of institutionalization for people  with disabilities, whether it be a mental illness, mental disability or physical disability.

Being in a position of leadership is difficult enough as it is, but to work with people who has determined in their minds that I wouldn’t be able to handle my responsibilities is beyond frustrating.  It would be remiss of me not to admit that I had it on my mind to quit on several occasions, but it would have proven the people who had their unfounded suspicions about me right.

First of all, let me explain how I came into the position I presently hold. I basically inherited the position after the predecessor resigned from his duties due to health concerns. I had been elected an assistant to the Superintendant, and in retrospect, I guess it exposed me to the reality that no matter what you do, good or bad, people will always criticize you in a negative way.

I mean, even before a week had passed, I was hearing how much I was going to get used from a friend. I still remember the night when this friend was carrying on and laughing almost satanically about how much I was going to get treated like a puppet. It was scary because it seemed like this friend didn’t want me to succeed from the start.

First of all, any idiot would understand that being a subordinate means you have to take orders. It’s not being used, it’s doing your job. Anyway, the bad part about the criticisms is that the people who were talking didn’t even have the fortitude to come to me about it. I had to get it through a source who said “a little birdie told” them, which I think was so disrespectful to me.

I remember when I did my internship for a local newspaper. I started getting lax in my work, and right alway, the person who I was working for pulled  me aside in a private and respectable manner, and told me what I was doing wrong. She didn’t pick up the telephone and blab it out for the whole world to here.

If you don’t even have the courage to talk to the person face to face, then you obviously think very little of him as a co-worked and a leader. Over the years since I’ve held this position, I’ve been on newspaper staffs where I’ve been an editor in various capacities, and only once in the two and a half years did I experience a level of disrespect as that. No one ever tried to talk over my head or down to me as if I was a child. Furthermore, I was given the material I needed to do my job up front. I didn’t have to wait years, with my time almost up, to be fully equiped to do my job.

I guess it all depends on the environment you’re in. I mean, some people don’t know how to treat other people with respect. It’s a combination of having no class, being ignorant and careless of other people’s feelings, and having a false sense of entitlement that gives people the delusion that they’re better than everyone else. Many times, I found myself in a situation where I could say we start at such-and-such a time repeatedly, but no one was there on time, and I had to start late. It’s comical because people ended up giving me advice about starting on time. Personally, I don’t believe in “CP time” or “being fashionably late.” I’m a very punctual person, and being in a position of leadership means that the example begins with the leader, and what I noticed lately is that when someone else says to be on time, people listen to them. 

In addition, people who have been part of the organization for a handful of years have suddenly decided that the organization needed a policy change because the current policy is outdated. I mean, if people want to be technical about it, then the United States constitution should have been revised at least 20 times in the last 200 plus years it’s been in existance, and the changes to the constitution has come as additions, not changes, only because a group of people had been unfairly denied the rights that they were entitled.

The sitaution here is that people want to change policy procedures because they want to follow the rules on their own accord or they want things to be their way so it will benefit them. As long as a policy is not oppressing anyone or providing an unfair advantage to anyone else, then leave well enough alone. It’s like coming into someone’s house and rearranging the furniture because it looks better to you.

To tell the truth, my experience has taught me that having a position of leadership is not all it’s cracked up to be, especially when no one is willing to cooperate with you.  Some people think that leadership is all about having status and flexing their muscles. The kind of people who always want to be seen and noticed for the work that should come from their hearts are not leaders. Personally, I could care less having a title after my name given what I been through the last few years.

People have to understand that being a great leader isn’t determined by how much he or she can tell people what to do. To me, being a great leader is measured by how much you can unify people and work with everyone, not just your family and friends. It  means putting your personal needs and wants aside, and doing what’s best for the common good of the group that you’re in charge of. For six years, I’ve tried to do that as best as I could in the capacity that I made the vow to serve. 

I feel for Barack Obama whole-heartedly, and I understand the frustration he feels trying to work with some people who refuse to work with him because of their small-minded beliefs.  I understood the aggravation he felt when Representative Joe Wilson heckled Obama during his speech on healthcare (when has a sitting president ever been disrespected by members of congress like that whether they disagreed or not), because I feel the aggravation whenever someone walks out the side door near me whenever I try to do my job.

I encourage him to be a uniter instead of a president who can’t be told what to do. He should remember that it’s easier to throw his weight around than it is pulling his own. Anyway, as far as I’m concerned, I’ve learned so much about what it takes to be a good leader, and on the other hand, I’ve learned that just because you have a position, it doesn’t mean that people will respect you. To this day, I still don’t know whether I earned anybody’s respect or not.

It’s sad that people’s hearts are so hardened that they can never be changed, and they always want to be right.

I have had all these topics I wanted to write about, specifically dealing with ableism/disability, and I just can’t right now.  Whenever I start researching for my topic, I get really angry at everything I read – and then I let that anger fester in my head so much that I find myself not dealing with people that well. My overall regard for the human race basically goes down the toilet – and I don’t like feeling that way.

As a coping mechanism, sometimes I let myself not think about the ableism (or try to) – even though it’s permeates every part of my life.  I still know it’s there in the back of my mind, and I always recognize it when I see/hear it, but I brush it off.  I have to.  If I let it get to me so much, if I let the reality sink in every day, I would not be able to function the way I do.

When I don’t think about ableism, or when I sort of play into it (read the bad activist moments I mention in this post: click), I feel guilty.  And you know what? I shouldn’t.  As the person on the oppressed end of things, I get a pass.  As much as the able-bodied/neurotypical want me to, it is not my job to educate people (even though I do through my blog because I choose to).  I have to live my life the way that makes me happy and the way that allows me to survive.  Even if that means putting my activism on the back burner – there is a time for everything, and sometimes, it is not the right time and that’s okay.

So, what do I do when I get activist burnout?  I look at blogs like Cute Overload and read books from my ever-growing collection.  I also look at my silly TV shows online, such as Ugly Betty, Flash Forward, and Survivor.  But even when I do these things, I just can’t get away from it.  For example, on one of the Cute Overload posts (of ALL places!), the author made a “joke” about a kid who rides the short bus and wears a helmet.  Some people spoke up about it, but the majority did the usual “But it’s just a JOKE – lighten up!” thing.  Way to be a total douche while also invalidating our feelings.  On those TV shows, there’s always *something* to remind me that bigotry is alive and well – such as the stereotypes on Ugly Betty or the constant sexism/racism/ableism displayed by certain Survivor cast members.

Like I mentioned before, I can only try to not think about it.  And see – it wasn’t my intention to write about disability, but this is where my thoughts led me – I ended up writing about it anyway.  Next time, I’m going to write about something silly, like the cuteness of squirrels.  We’ll see how that goes.

NOTE: Some of the links below may be triggering, and one link (the blog) leads to an extremely offensive site.

I’m sure many of you remember the forced sterilization and mutilation of Ashley, a young girl with a disability, at her parent’s request. The parents even had a blog dedicated to their “cause” and referred to their daughter as a “pillow angel.”   This removal of organs and injection of high levels of estrogen was illegal, a gross violation of human rights, and completely steeped in ableism and sexism.  According to Ashley’s mother, there was no need for her breasts since she will not be breast feeding “and their presence would only be a source of discomfort to her.”   As far as the removal of the uterus, this was done supposedly so she could not get pregnant in case of rape, and so she would not have to deal with any period-related pain or bleeding (see links above).  Women and children with disabilities have a long history of sterilization and mutilation at the hands of their carers – Ashley’s case is not anything new.

Many comments on the mainstream news sites sided with the parents.  Even on so-called progressive Feminist blogs, there were people stating that this was a complicated case and we must think of the parents.  Apparently, some feminist principles only apply to the able-bodied and neurotypical.  While not surprising, it still stings to know how widespread ableism is, and how far that ableism goes in harming people with disabilities.  Ashley is just one of the many of us who face this sort of oppression – the usurping of our bodies-something that we should own and we have a right to own.

I always knew there was a power imbalance between us and the able-bodied and neurotypicals, but I only recently started to think critically about the relationship between people with disabilities and the concept of ownership.

I want to share my thoughts with you.

People with disabilities, according to society, do not own their bodies or even their lives.  We are subjected to countless unwanted and forced surgeries or the removal of parts of our bodies.  We are told, starting from childhood, to use different contraptions to make us “more normal” that cause extreme pain or discomfort.  We are pressured by doctors to do things to our bodies, including invasive procedures, that we do not want or need.  Society tells us we will never be with someone, we will never live a “normal” life, we will never be happy, and we should just accept the pity we receive from our fellow humans; this takes away our right to decide our own happiness on our own terms.

The relationship between ownership and personal or material objects also needs to be explored.  Something as simple as an able-bodied person resting hir feet on a person’s wheelchair is a perfect example of someone using their privilege to diminish what we own.  I own my wheelchair, it is part of me – it is not a stool for your foot and you can’t make it your own.  If a nurse rearranges someone’s bedroom or throws away a person’s favorite shoes without asking, this is not okay.  It is not the nurses’ bedroom or shoes, and hir actions are a direct result of the power imbalance that can go on between care giver and the person with a disability.

I would not be exaggerating if I said I have to deal with the hijacking of my ownership almost every day.  There are few people who I feel completely comfortable around and who I know will not and do not take any power away from me unintentionally or intentionally.  It’s a scary world for me, for us, but this world and my happiness is something I am willing to fight for.

We were recently mentioned on FWD/Feminists With Disabilities (thanks!), a great blog that I’ve been reading lately. On November 19th, FWD will be hosting the Disability Blog Carnival, which I will be participating in – the optional theme is intersectionality.  I’ve never done a blog carnival before, so I’m looking forward to it.  Also, if you have a blog, this is a great opportunity to really come together as a community and share our experiences.

Most people are not familiar with the movie Hollywood Shuffle. It was a comedy that satirized the stereotyping of African Americans in film and television. I never saw the movie myself, but I’m very aware of the works of  some of the co-writers of the film. Keenan Ivory Wayans and Damon Wayans were actors on the highly-popular early-1990s comedy sketch television series entitled “In Living Color.” The series had its funny moments in dealing with the social issues at that time, but where I lost respect for the show was when it started to run a regular featured character named Handiman.

Anyone who has ever seen “In Living Color” knows that the show was famous for pushing the envelope concerning race relations,  sexuality and censorship.  During its third season premiere, the show focused on the Los Angeles Riots that broke out in April of 1992 after four white officers were acquitted for beating Rodney King, a black motorist who was allegedly speeding though several residential streets in the San Fernando Valley area of Los Angeles.  The show was remarkable in bringing serious social issues like poverty and racism to the forefront through its use of comedic relief, but I felt, and still do feel, that “In Living Color” pushed the limits too far by depicting people with disabilities that way it did.

The character was dressed in a blue latex suit that covered his head, and he was constantly babbling like an idiot and drooling on himself. I admit that I found the Handiman skits to be hilarious when when they first premiered.  The disabled community had been non-existent in Hollywood up until then, and it continues to be non-existent today, so it was good to see some representation, and me not knowing how much of a negative image it was at the time, appreciated the recognition.

I was in my junior year in high school when Handiman made his debut. Ever since I was mainstreamed back in the fifth grade, I have always caught hell because of my disability. I remember being teased many a-day throughout grade school, high school and even college. Handiman perpetuated the stereotypes that people had about people with disabilities.  Even to this day, the techniques have changed, but I pretty much know when people are trying to belittle me. Children aren’t as cunning or crafty to hide their emotions, so they would usually laugh or make “retarded-stupid” comments about me.

Adults think they’re more clever with their emotions. They either try to talk over my head as if I were a child or they’ll talk to another person who happens to be with me as if I needed a translator to interpret the same language. Another thing that adults do is avoid eye contact and cut me off when I’m speaking. These very things have been happening to me a lot recently, but I’ll save the details for another post.

Although the movie and television industry has arrogantly prided itself in promoting diversity, one group of people have been conveniently forgotten about. While the black-exploitation movies of the 60s and 70s have progressed to a level were Blacks, Hispanics and Asians are depicted in a more  positive light, and the role of the Gay community in Hollywood is expanding at a rapid pace, where do people who have disabilities fit in?

Often times, when a disabled character is written into a script, the producers and directors will usually cast an able-bodied actor to play the part of that disabled character.  Helen Keller is a prime example of Hollywood’s neglectful treatment of people who have disabilities. Instead of finding someone who was blind or deaf to play the part of the activist, the producers chose to cast Patty Duke in the 1962 version of a movie about Keller and they also chose Abigail Breslin (Little Miss Sunshine) to play Helen Keller in a Broadway Musical. The last time I checked, neither of these actors had a disability.

Before I end, I would like to mention Daryl “Chill” Mitchell (paraplegic) and Chris Burke (Down syndrome) for being pioneers for people who have disablities. It’s nearly impossible to make it onto the small and big screens for the average person, but for people who have disabilities, it’s a guaranteed exclusion.

Maybe it’s time for the movie and television industry to get a reality check. You can typecast disabled people in the most stereotypical way. You make us seem buffoonish and child-like, but you can’t find or don’t attempt to find anyone who has an actual disabilitity to play the roles.

A recent post at Feministe got me thinking about my own restaurant experiences, and how, as a person with a disability, I am treated by restaurant staff.

Let’s start from the beginning.

If we’re going to a place we have never been to, we must check if it is accessible.  EVERY time we forget to do this, or we assume that the place will be accessible, the restaurant ends up having two flights of stairs or narrow doors.  Sometimes, the staff will tell us they are accessible “but we have a few steps out front that we can help you with.”  Assholes don’t even know how much my chair weighs.  Plus, HELLO, dangerous! Lawsuits!

If I can get into a restaurant, I will either not receive a menu (because I am just at the restaurant to look at the decor, evidently), or the waiter asks if we all want menus.  Or they ask if I need a children’s menu.  I’m almost certain that able-bodied folk do not experience this phenomenon, and this menu game is only done for those who look gimpy.  I know, I know, I should ask for a menu if I don’t get one, right? But no, I just borrow my mom’s.  I don’t feel like dealing with it.  Bad activist moment.

Now, I am ready to order.  My mom recites my order for me (bad activist moment #2) because I’m not loud enough.  Sometimes I order myself.  I dunno, it’s also kind of a social anxiety thing.  I have trouble doing simple things like answering the phone or asking someone in a store to help me – so ordering food is freaky for me; I inherited this from my dad.  Either way, the waiter hardy ever addresses me personally.  This is the plight of many a gimp – the old “talk to the aide/parent/nurse, not the actual person” trick.

When my food arrives, my drink is sometimes in a child sippy cup.  No joke.  This happens more at chain restaurants like TGI Friday’s or Ruby Tuesdays.  I don’t order from the children’s menu.  I know I look young, but good god, I don’t look THAT young.  But I guess they think people with disabilities are all child-like and love brightly-colored cups with clowns on them and gigantic purple straws.  Who knows.

I can’t say this stuff happens at every restaurant, but it occurs at least 80% of the time.  I’ve learned to just deal with it – I shouldn’t HAVE to, but if I protested/corrected every restaurant or waiter that expressed ableism towards me, I would get burnt out.  So, when I encounter these moments, I just think in the back of my mind that I am doing other things to fight ableism – other things that are more creative and empowering to me.  Like this blog.

 

Hello, everyone! I am the second half of the dynamic duo of bloggers. My name is Robert, and I live in Gardena, California. Like Erin, I also have a physical disability (cerebral palsy), but it hasn’t really stopped me from living my life. I’m a free-lance writer for a couple of newspapers in the Los Angeles area, so writing is something that comes natural to me.

I have a lot to blog about.  The last three years of my life have been amazing to say the least, topping everything off with meeting the most wonderful young lady in the world. Looking back on the life that I have lived so far, I can honestly say that it hasn’t been a bad ride. Anyway, I rather not give too much information away in the introduction, but I assure you that this blog will be compelling to read, so enjoy.