staceymilbern

those pesky expectations

2008-01-14T00:28:00Z

Ever since one of my friends said her New Years Resolution was to not have expectations, it’s been on my mind. I thought about it that night forever, through the week, and through some conversations with friends. I couldn’t and still can’t grasp this idea of not having expectations. I DEFINITELY understand how much it hurts when something isn’t what you thought it’d be. In fact that’s story of my life. Probably since I can’t even visualize letting go of my damn expectations. What would that be like? Feel like? No idea. I’m not sure even how to try.

I am by no means a planner. When it comes to events or projects, I’m very much the person that says “Heyyyy, friends!--- Let’s throw a festival or conference together without any money! You’ll do this, I’ll do this, and it’ll be so easy!” Sure, the things get done and it’s all good but of course it’s never easy. I’m positive the people/friends who agreed to do the project MUST go through a period of actively hating me (I would) and for me personally, having this sort of pattern means that my activism occurs in spurts and is followed by a month or two of burn out.

But even though I am not the best planner, I have my life mapped out. I was one of those nerdy overachiever kids who knew when they were going to take the SAT and ACT by sixth grade and although they hardly change, I check my college credits obsessively to make sure I’m on track for graduating. I know what law school I want to go to and how I’m going to afford it. What internship programs I want to do. Where I’m going to live. How I’m going to have insurance. What my PA [personal attendant] and nurse schedule is going to look like so I don’t wind up not being able to get out of bed if one cancels. And if you need to know, I can tell you what you need to work and keep your SSI/Medicaid. That’s me. The scariest thought is going off this plan. My plan is based on expectations. There is security in the plan. Though I understand things will pop up, having a plan and back up plan means having insurance, being able to eventually have my own place, and work. I’m not sure I can afford to not have a plan.

A lot of disabled people, like myself, have to plan their daily life around a plan--- a plan that involves PAs, paratransit [transportation], scheduling interpreters, and figuring out how to have privacy (if we have any at all.) Perhaps I am wrong in tying “having a plan” to “having expectations” or am making expectations to be bigger than they are. My friends probably use the word expectations in a different way, they’re disabled too. They must have plans. I know they reject the kind of expectations that lead you to disappointment, not life-threatening happenings (in fact, one of them is the best planners/facilitators I know.)

Still, expectations for our community don’t exist. By law we have to have equal education, but too many times teachers don’t give us a chance. We have vocational [job-related] programs but not enough counselors care or the programs aren’t supported enough to really make any waves. Programs like SSI and SSDI [social security] give the bare minimum and are designed to keep us poor and hungry. Society and the system don’t invest in us because they don’t have expectations for us. This is why our people are undereducated, underemployed, and often living lives where their potential is not maximized--- because of a lack of expectations.

Maybe I can grasp not having expectations in the sense of not expecting to have a big birthday party. Or expectations for a pay raise. But can I really live without expectations?

what fuels my fire

2007-11-26T22:40:00Z

I think there are many times when your disability activism or policy work seems so overwhelming that you just want to take a break (there was a disability blog carnival about this earlier this year). A fellow blogger, Sudy at a Womyn’s Ecdysis, says that the frenzy of the activist neutralizes ones work for peace. In other words, we can’t just be moving and moving and moving without having it come from a place within.

I find peace through writing poetry, listening to music (lately I‘ve been really into Billy Bragg and Immortal Technique but that’s a side note J ), or having good coffee with friends who are activists and enjoy the same. What works the most though are moments where no one but other disabled people can understand my point of view or share my experience. These moments, even though they are often difficult or hard to go through, can be the best reminder of why we work to build community.

I was reminded of this when earlier this semester, a professor was holding his annual political science party at his house and was angry that in 3 years, I had not attended once. I wanted to---afterall, what poli sci nerd wouldn’t want to eat great food and play games like “guess who will win the next election”? He could not understand why I wasn’t comfortable with leaving my chair in the garage, having members from the football team carry me up the stairs, and sitting in on the sofa all night long.

I thought of a paper Joe (philosophercrip) did earlier this year for his thesis about how assistive tech like speech devices, wheelchairs and service dogs, when used enough and becomes a part of a person’s liberation, becomes so much a part of our body and our space that removing it is disturbing and scary. Although some of the misunderstanding with this professor was my fault (my self-advocacy skills suck), it really hit me that no one could really understand my connection with my wheelchair more than my disabled brothers and sisters.

I love you folks more than you could ever know. What keeps a community going is the bond shared between its members.

It Doesn't Work For Everyone

2007-11-06T18:28:00Z

“Who better to take care of you than your family?”

I hear this a lot when people are advocating for medicaid dollars to be spendable on personal care attendant services given by family members (vs. hired personal care attendants). The problem is, do we want to be “taken care” of? Or do we want to be independent, which does not have to mean living alone or providing your own care or driving yourself around but more of having the power to make your own choices?

When advocating for personal care services, I believe options should be available for people to choose between hiring someone or paying family members. Disability advocacy and activism is that---fighting for choice. We don’t advocate to say “you HAVE to be in a mainstream class.” or “you HAVE to participate in this program.” We fight so we can options. People should be able to pay family members if they think that’s best for them.

However, paying family members wouldn’t work for me, although that may sound harsh since right now my family still does provide many hours of care for me (although I receive 12 hours of home health services). But the thing is pay=power and right now too many families have control over their disabled brothers, sisters, children, and parents because the people need PA services. It is definitely hard to find, train, retain, and keep good relationships with PAs but when you have a PA, you are able to decide what time you go to bed. You are able to decide what you’re going to do for the day or what you’re going to eat. You aren’t dependent on another person; instead you have someone being paid to work for you. I have a hard time picturing how independence would work with a dominant family member, although I’m sure it does work for a good number of people and there are a lot of great allies out there.

My brother recently got into some trouble and has moved back home for a few months. He now lives under my parents’ roof. He has to follow their rules, just like I have to. He was only gone for a few months before he had to come home but it’s been a big transition for him. I’m getting to take a vacation with my friends (Memphis here we come!). I’ve arranged my PA care. I’ve figured out how to pay for it. There isn’t any way this vacation relates to my family but my mother is still upset that I didn’t “ask” her. Life is different when someone else can tell you what you have to do.

14 months ‘til I graduate and move out…

in the words of sojourner truth: ain't i a woman?

2007-10-30T23:52:00Z

Crip. Queer. Freak. Democrat. Activist. Southerner. Korean-American. Woman??

I’ve been taking a Women’s Literature class at school and it’s really the only women’s studies type of class offered. Luckily, the professor is open-minded and well-versed in issues like class, reproductive rights, racism and heterosexism.

The more we study, the more I realize how much I’ve never really reflected on my experiences as a woman (…and, yes, I’m one of those people that reflect and self-examine everything.) I’m not sure that my professor believes me when I say this but I’ve only grown to understand my body in terms of disability, queerness, and as an API (asian pacific islander) person. Yes, my life experience has been shaped by my military family background, class privilege, fundamental Christianity, and a bi-racial, bi-cultural, bi-lingual family. But being female?? No. I haven’t thought of my body or experience in terms of gender.

Disability on the other hand is such a strong part of my identity---saying something like “I don’t see myself as disabled or having a disability” is not really an option for me. Disability has framed my every experience; even when I am doing something that seems totally unrelated to disability (let’s say, going shopping or painting a picture), disability still plays a part because lack of accessibility or a barricade of bigoted attitudes will affect the shopping trip and my experience as a disabled person will come out in my art. Maybe not in terms of scaling a mountain (Korean culture cares more about SAT scores) but my life, until recently, can be described as that of the “supercrip”--- the disabled person who has everything to prove to the world and is made into an inspirational “crip on a stick” (as my friends like to say.)

But back to my experience as a woman… as much as I talk about loving your own body, I know I still internalize society’s concepts about disability and desexualize myself. My mother and I still refer to a period as “that thing” like it’s Voldemort (old fashioned Harry Potter reference there, folks) and we‘ve been doing that for almost a decade now. I love who I am. I love my body. Why am I doing this?

I think this is perhaps why I took the Katie Thorpe story that emerged last month so personally. The whole premise of removing her uterus was that she was not a woman but a disabled person. But the thing is, she and I are both. In fact, we are many things. Who we are is made of a cloud of identities (but not necessarily labels). My friend Joe (philosophercrip) often quotes Albert Camus by saying “the only way to deal with an unfree world is to become so absolutely free that your very existence is an act of rebellion.” Until we are able to accept all of who we are, we are internalizing shame and allowing ourselves to be oppressed by others.

maybe i'm really just a one-dimensional person.

2007-10-16T14:12:00Z

It’s been a long time since I’ve blogged on Disaboom, I think probably because I’ve been feeling really drained out lately, especially with all the stuff around Katie Thorpe, a young woman in the UK whose parents are getting ready to give her Ashley X treatment to make her easier to take care of. It was really hard to be a part of the blogworld when the conversations were not on how will this affect disabled people but on whether we even had the right to live and breathe the same air that other people do. There was one person who even compared disabled people to kittens and caregivers as the owner of the kittens. I spent a lot of time angry but a lot of time heartbroken and in bed, too.

Two nondisabled bloggers recently wrote about identity. One blogger was talking about how identity in general was just a figment of our imagination and that we needed to connect on a different level with people (it got weird, he started talking about mushrooms and such.) Another blogger wrote about being stuck in a box and how many activists end up doing what they’re passionate about and are only that one thing and nothing else.

It got me thinking…do I live in a box? When I want to express myself, I write poetry…but my poems are always about my experience as a disabled person. Sometimes I do things like design shirts, bags, buttons… but those have activist themes, too. I like doing web design stuff but again, those are disability-related as well. My room is CRIP-themed with activist posters, pictures, and such everywhere. Even when chatting on AIM or the phone with friends, it’s about the disability community. I guess the answer is yes. I live in a box.

But is it okay to be in a box? How can I get out of it? What would I do if I was out of a box? I love my life, I love disabled people, and I’m extremely happy, but in the long-run is it okay to be one-dimensional?

The Twilight of Radicalism?

2007-10-05T16:02:00Z

Why I celebrate Disability History Month...

This past Saturday, Emily (my PA) and I flew to Connecticut so that I could present at an Independent Living conference. The flight went smoothly and I co-presented two sessions with friends: one about what people wanted to see for the future of the Disability Rights Movement (DRM) and another about the “twilight of radicalism.”

The second presentation was one I was supposed to co-present with Judy Heumann, a living legend with many, many stories to tell. I had worried a lot about this workshop, particularly because I believe this day and age is when disabled people need to be radical more than ever and the title was arguing for an end to activism. To me, disabled and non-disabled people have tied the word “disability” so intimately to the word “awareness” and “advocacy” that people think that’s what it means to be Disabled…but isn’t disability more than that? Aren’t we more than that?

To me disability is an identity, one that I claim with pride. As Disabled people, we have a rich history of protests, sit-ins, and experiences that often go unnoticed. People do not realize the power they’ve inherited just by being a part of our community. I think this is where radicalism comes in, even if it’s not in its traditional forms…

We need to practice radical disability pride. We need focus on militant community-building, where love for each other and ourselves is the foundation of everything we do. If we do want to teach awareness, we need to focus on disability as an identity or cultural construct.

So..

In celebration of Disability History (And Awareness) Month,

Here are some links to check out:

Pictures of our Movement Taken by Tom Olin

What’s Pride Got to Do with It?

Speeches by Ed Roberts

Justin Dart’s Manifesto

Disability Culture Resources Written by Young People

Disability Culture Teleconference Registration for Oct. 9^th

better late than never: the abbrieviated version of who i am

2007-09-25T04:27:00Z

I realized that my favorite entries on disaboom’s blog features have been the “intros” that people have been writing. We share so many common experiences but we’re all still very different. It’s interesting to find out about all the people on here.

So better late than never... here’s who I am!

Although I technically do a lot of advocacy work, I am not a disability advocate. This is largely because I identify as a disability activist who is interested in moving from the policy/advocacy model of disability (okay I’m making up my own models now, the main ones that are well known are the charity model, medical model, and social model) to a community-based model where culture is celebrated and people/identity is the main focus. I believe the biggest issue our community faces is that many people want to deny their disability and consider it something to “bear” rather than embrace. If we focus our efforts on building community (for example, disaboom, teaching about disability history, pride parades, more books/music/art) people will be proud to be disabled and advocacy and policy work will naturally be an interwoven into what we do. So basically, advocacy will not be WHO we are, but what we do in addition to many other things. Think big. Think beyond policy.

I identify as q-u-e-e-r (if I spell it without the dashes, the word is censored) because none of the acronyms in glbt really fit me and because I have a hard time connecting with mainstream images of gay and lesbian people (they all happen to be white rich nondisabled men or women...) I heard someone say this week that glbt sounds like a sandwich. J I should add that to my reasons.

I’m Korean-American and live with my family, as is Korean custom (and also convenient since my school is 20 minutes away). Our halmoni (grandma) lives with us and doesn’t speak English; thus making for lots of fun stories (i.e. Why is it that the one non-english speaking person is always the one to answer the house phone???) and good food.

I say that I’m a student by day, activist by night because no one at school knows anything about me (and it sounds superhero-ish which is fun). For example, my professor today asked me what I did this weekend and when I responded by saying I went to a conference, he gave me two words: “oh cool.” and then went on to talk about golf, drinking, and doing the chicken dance with another student. (I could have gone to a conference in Australia and he wouldn’t have cared to know what it was about).

In my free time, I like to blog, write poetry, collage, paint, bake betty crocker goodness, and spend time with friends talking about the future of the movement.

So yeah J That’s me.

The F Word: Why disabled people should be feminists

2007-09-24T01:59:00Z

Still wondering what in the world Disabled people have in common with feminists and WHY we should be feminists? Some food for thought: Many people have multiple identities (i.e. disabled people can be also be women, people of color, ***/glbt, etc.) Women and disabled people both have a strong history of oppression and experience low expectations, discrimination and other things. We both experience colonization of the body with doctors poking and prodding whenever they want to. We both often lack access to needed information (i.e. reproductive health). Feminist issues are also often disability issues (i.e. the case of Ashley X, a 9 year old disabled girl whose parents used stunt hormones and a hysterectomy to make her easier to care for).

Although being exposed to feminist literature and understanding the importance of reproductive justice, I had a hard time calling myself a feminist up ‘til now. The media portrays feminism to be mostly about abortions and when disabled people (yes, us!) are the first to be aborted or euthanized, it can make it a little harder to embrace “choice”. It’s also hard to talk about “choice” when you have to have money to have choice and a good portion of our community doesn’t.

However, feminism is much more than one issue. Feminists understand how women have been oppressed in a patriarchal [male-dominated] society, much like how disabled people have been oppressed and told what to think about our own bodies in an able-bodied society. ***/glbt people also understand how a heteronormative [the expectation is that everyone is straight] society affects them as do people of color (poc) understand the affects of white society on pocs. We need to interact and involve ourselves in these communities so we can better understand how the dominant culture affects us and how to fight against it.

Also, the role of allies is beyond important. Many people who call themselves disabilities advocates do not understand or respect the boundaries of the ally. There are a number of good ones, but there also are a lot who do not understand basic philosophies of our community/movement. If we can find people from the feminist, ***, poc/woc community to be allies, it has great potential to bridge communities and create revolutionary change.

The future is beckoning and as we move forward, it is important to remember that the 504 sit-ins, which is one of the earliest moments in the disability rights movement, would not have been successful if activists did not have the support of groups like the Black Panthers, the Gay Patrol, labor rights groups, etc.

Pick a side: splits in the disability community

2007-09-19T20:03:00Z

UNC v. Duke…. Matisse v. Picasso… Democrats v. Republicans… The National Federation of the Blind and the American Council of the Blind… Wondering what they all have in common?

A history of rivalry.

I’m trying to figure out how to write this blog entry without having it reek of privilege and assumptions about communities I am not involved in. I’m not really here to say that the split in the blind community is horrible, bad thing that should be looked down upon--- I don’t think I’d ever feel like I could make a claim like that.

Rather, I want to ask questions and figure out if divisions in communities always have to be negative thing. On one hand, if members don’t agree with the philosophy of one group, they can join the other. By having variety and options, it creates more opportunities for people to voice their opinions and become involved. On the other hand, it seems like people laugh at the whole NFB/ACB enmity and take them less seriously, thus making them less powerful in a political sense. So honestly, I’m not sure. Maybe the difference is that people aren’t mocking the fact that there are two organizations but that they fight.

Last year I was invited to speak at ACB’s state conference. I had about 30 people in my workshop but if I recall, there were only two or three workshops going on which means it was a bit of a low turn-out. NFB was having their annual conference the following weekend… ironically in the same CITY, at the same HOTEL and mostly about the same issues. I’m not sure that the two organizations could have come together and ever will, but it seems like it would have been more successful if they had pulled their resources.

At the same time, people seem happy. Most people I know who are blind or have low-vision are active and involved in NFB or ACB which is different than a lot of other specific-disability groups. Maybe they wouldn’t be if they weren’t expected to pick a side and go with it. Maybe they would be apathetic if there wasn’t drama. Maybe people are drawn to that.

I think things are changing though. More young people are getting involved in cross-disability organizations that don’t have that disability-related drama (or as much anyways). And in one particular state, two friends of mine have both been given the duty of starting the student arm of both groups. They are going work together (under the table) and bounce ideas off each other. They don’t hate each other; in fact, they are friends and respect each other. I want to believe that things will be different in the future, particularly because young people are less focused on politics and advocacy and more on building community. This is a huge step in moving from just being a movement to being a community.

Mail order your holy oil today! Blessing from prophetess included!

2007-09-17T21:38:00Z

“You don’t have to get any birthday present for me. I just look forward to the day when you can walk and we stand together. That will be my present.”

This is a message my friend received from her boyfriend (please accept that I’m using the term quite liberally). She spent a whole day crying about this message. Instead of telling him to “take it or leave it” and that she’s who she is, she’s started taking mail-order holy oil from a prophetess [someone who believes they are a speaker for God]. Yes. That’s right--- I said mail-order holy oil that supposedly heals people. Her PA dabs some on her forehead everyday and my friend stays at home waiting for something that I’m unsure of.

There seem to be two types of people with disabilities (PWDs). The first group of people is searching for a cure that may come in the form of a savior, a magic pill, or endless top-of-the-line surgeries. They see disability as something that needs to be overcome. The second group sees disability as a social factor and not something that is itself disabling. To them, what is disabling is a society that is inaccessible or ableist [the idea that disability is negative or bad] and not an individual’s disability. Of course, there are also people who fall in the middle, people who would accept a cure but do not wait for it.

I am in the second group. I’m strongly against some kind of magic “fix” that would rid the world of disability. I cherish disability because I get to be a part of such a cool community. I see a wheelchair as liberation [freedom] and believe I’ve spent too many hours trying to conform to the ways of non-disabled people. The same can be said for people with other disabilities too: deaf people are often denied the opportunity to learn ASL and people with intellectual or behavioral disabilities are taught that unless they can be a certain way, they are not a part of the group. Society often does not try to understand or accommodate us, rather we are told to change for society. I guess this is where the idea of “survival of the fittest” comes in?

Discussion around cures and disability is a difficult one to have as it is a conversation about what is “life.” We aren’t going to get everyone to agree on the same thing or see disability one way. My friend might be a life-long customer of this prophetess (I sure hope not though). But, regardless of whether someone wants to get rid of their disability or not, I still want them to love themselves. I don’t want my friend to think she has to be one way to have a fulfilling life. People, particularly those with disabilities, need to know that disability is a beautiful, complicated part of life and makes us who we are.

So that’s why I’m here blogging on disaboom.com. Hello! J