He has no clue what I just said-a 1in4 teachable moment

Believe it or not, I don’t always sit around thinking about disability, or having a disability. Now, I’m not going to lie. I spend quite a bit of time thinking about it. I think about how I can be more involved in advocacy and what can I personally do to help the disability right movement even if my efforts are miniscule compared to the movement as a whole. But when ‘I’m with my family at a waterpark, it’s not on my mind every single minute. Like it’s not on my mind as I’m walking down the hall with my sister and my niece and I run into some who says ”Hey, did you go to York high school?” I answered yes. “When did you graduate?” “2004” “What did she say?” the guy asks my sister, who I was clearly with. “2004” my sister repeated. “It was good seeing you,” the guy says and walks away. Ok so this wasn’t the conversation verbatim, but it’s a pretty good representation of how it went which leads to the big lesson. ` And I was tempted to launch into some big explanation for the guy about how he didn’t really approach this situation in the best manner considering the fact I have given disability awareness presentations which include a role play about this EXACT SAME SITUATIION.

Anyhow, If you’re talking to someone, who is hard to understand, ask them first, to repeat themselves. Not the person who they’re with. Now if you still can’t understand them, you could ask them to write down what they’re saying, and then if they can’t write it down and they are with a companion, it’s fine to ask the person they’re with for clarification but it is much much appreciated if you put in a little effort before resorting to the last solution. Now this scenario isn’t necessarily transferrable to everyone with a disability. Some people are non verbal for instance. Some people with cerebral have very severe speech issues and they might then use a different form of communication like a board that they type on. But if you ever find yourself in this situation where you encounter someone like me who is not nonverbal but may be difficult to understand, make an effort, a good one, first to understand them and let them, in whatever way they can do so, be the one to communicate their feelings. Now, just to clarify, I’m not mad that this happened. I’ve run into other situations where similar things have happened. But, that doesn’t mean I’m not going to not use it as a teachable moment for others when I have the opportunity.

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The presidential candidate debates were held over the last two nights. Was disability even mentioned once?

So, this week we had the first of two debates between those in the wide field of presidential candidates. Disability issues weren’t even mentioned once. Yes, healthcare was mentioned but disability exclusively was not. Healthcare is a huge issue. But people with disabilities face a lot of other issues that those without might not. How will you ensure that people who want to live in the community are able to? How will you ensure that people with disabilities are included in the workforce? I called this site 1 in 4 to emphasize how prevalent disability is, because even as a person with a disability, sometimes I forget its prevalence. And yet in so many ways representation of people with disabilities is still lacking. Healthcare was talked about during the debate, and there is no question that healthcare is a huge issue for our community. But so many other issues are facing are community that are unique to us that need to be acknowledged. When the candidates were at one point talking about how the minimum wage raised, I thought, “Sure. It does. And yet still there people with disabilities being paid cents an hour for their work.” It often feels to me like people with disabilities are impacted more severely by things that impact most people, wages being one example. People with disabilities are capable of making their voices heard. Let’s not forget how influential the disability voice was in passing the Affordable Care Act. W[‘ll work on the campaigns of the democratic nominees and we’ll turn out at the voting booth (which had damn well better be accessible.) But if you’re a candidate, please don’t ask us for our support you if our needs and desires are not included for whatever agendas you plan to implement when you reach the oval office. So to all the presidential candidates I say this. Please remember the disability community. Remember that many of us still are not paid the minimum wage for the jobs we do. Remember some of us have no other choice but to live in nursing homes when we want to live in the community. And we are still disproportionately affected by the cost of healthcare as we often have many more health needs than the general population. Because as 25% the US population, we won’t give you our vote if we feel that you aren’t going to take any action on the issues that are impacting our community. Often times disability advocates spend so much time protesting and writing letters and trying to get things changed and people outside the disability realm don’t even know its going on. But if you know someone with a disability, be an ally to them in the political process. Ask them what changes they want made and how it would impact their lives in a positive way. There’s heavy lifting and it cant be done alone. Even if those images of children sleeping on floors at the border make you cry, remember some of those migrants also have disabilities. Involvement in the political process may mean those migrants with disabilities may have more access if they are let into the country. On all the political issues we face, when these issues are faced by people with disabilities there may be an added layer of struggle, but maybe this doesn’t always have to be the case. How tat doesn’t always have to be the case is what I want to hear from the candidates, A lot of issues that are face by the disability community are bipartisan. It’s not even one side versus the other. I’m sure there a democrats and republicans who feel as though people under 30 with severe disabilities should be able to live in the community instead of a nursing home. It’s more an issue of having these issues addressed at than who is right or wrong in how they are addressed. However, it’s not just the candidates that need shine a light on disability issues. I did not actively participate as a volunteer for either one of the candidates in the 2016 election. It’s been one of my biggest regrets since and it’s a wrong I intend to right with this election cycle. As people with disabilities we are the ones most likely to force the candidates to have an answer for how they’ll implement policies which will affect our community. I encourage all others to do it too. Go to a town hall. Volunteer for whoever the nominee is. Make your voice heard.

Hitting the bars with a disability-the hilarity and the horror (2015)

Hitting the bars with a disability-the hilarity and the horror Last night, not unlike any other thirty year old on a weekend, I went to a bar with a friend. We sat there, had drinks and a general all around good time. Suddenly, a man at the other end of the bar started talking to us. He asked us our names and ages. (I lied about mine.) And then he asked if my friend was my caretaker. Face palm. It’s funny that I don’t tend to run into these situations more often. I usually go about my life, go to restaurants, and these things don’t happen. Part of me wants to excuse the guy for asking me the question when i’m sure he was drunk. Because, what? I, as a person with a disability, can’t go out for a night of fun with someone unless they’re a paid caregiver? A short time later, the drunk guy left, and we ended up chatting with the sympathetic bartender about what happened. I explained to her that I was employed, a college graduate, and did not have a caregiver (which is not to say there aren’t many successful people with disabilities can’t require caregivers, because i know there are.) What’s funny is this happened just a few days after I went to Dunkin’ Donuts where I ordered a drink that I knew cost over $3 and the worker wanted to give it to me for $1. Part of me wanted to think that maybe he had just decided to do that for every customer that day because he was such a nice guy, but I seriously doubt it. It just baffles my mind that just because I have a speech problem people assume that I would try to buy something I couldn’t pay for. What’s sad is I think in that situation the guy wasn’t trying to do me a favor (although he thought he was). He was trying to do some thing to make himself feel good, but to me it totally backfired and made him look ignorant. So, lesson here, if you’re a business owner and you encounter someone who legitimately can’t pay for something, I think it’s fine to be charitable and maybe let the person have what they want. But never assume because someone is in a wheelchair or talks a certain way that they can’t pay, or that someone who they are in the company of is only with them for a paycheck, and not merely the pleasure of their company, because the company of people with disabilities has worth and value just like anyone else’s does. I’m not really mad about the situation at the bar, because I know drunk people say stupid shit. Of course I wonder if the guy is as much of an ass when he isn’t drunk. But I think I, unlike him, will be the better person and not make any assumptions.

He has no clue what I just said-a 1in4 teachable moment

Believe it or not, I don’t always sit around thinking about disability, or having a disability. Now, I’m not going to lie. I spend quite a bit of time thinking about it. I think about how I can be more involved in advocacy and what can I personally do to help the disability right movement even if my efforts are miniscule compared to the movement as a whole. But when ‘;m with my family at a waterpark, its not on my mind every single minute. Like it’s not on my mind as I’m walking down the hall with my sister and my niece and I run into some who says ”Hey, did you go to York high school?” I answered yes. “When did you graduate?” “2004” “What did she say?” the guy asks my sister, who I was clearly with. “2004” my sister repeated. “It was good seeing you,” the guy says and walks away. Ok so this wasn’t the conversation verbatim, but it’s a pretty good representation of how it went which leads to the big lesson. ` And I was tempted to launch into some big explanation for the guy about how he didn’t really approach this situation in the best manner considering the fact I have given disability awareness presentation which include a role play about this EXACT SAME SITUATIION, If you’re talking to someone, who is hard to understand, ask them first, to repeat themselves. Not the person who they’re with. Now if you still can’t understand them, you could ask them to write down what they’re saying, and then if they can’t write it down and theory are with a companion, its fine to ask the person they’re with for clarification but it is much much appreciated if you put in a little effort before resorting to the last solution. Now this scenario isn’t necessarily transferrable to everyone with a disability. Some people are non verbal for instance. Some people with cerebral have very severe speech issues and they might then use a different form of communication like a board that they type on. But if you ever find yourself in this situation where you encounter someone like me who is not nonverbal but may be difficult to understand, make an effort, a good one, first to understand them and let them, in whatever way they can do so, be the one to communicate their feelings. Now, just to clarify, I’m not mad that this happened. I’ve run into other situations where similar things have happened. But, that doesn’t mean I’m not going to not use it as a teachable moment for others when I have the opportunity.

Women and the disability right movement

Over the past few years, what it has traditionally meant to be feminine has fallen by the wayside. When it comes to gender, now we have more boxes that we can check off in terms of how we identify, and this is a good thing since so much of how people want to express their gender doesn’t fit into the male or female box.

As a cisgender woman with a disability, what does the fact that It’s Women’s History Month mean to me? It means that I want to be seen for the glorious female that I am. And I want all females to be seen this way, not as someone who fits into a box like black or white, working or unemployed, single or married. Because that’s the problem-when we separate things by boxes, we simplify them, and women are varied yet complex.
I think of being a girl with a disability in school and desperately wanting a positive female role model with a disability to look up to. And I’m sure there was some day in elementary school where we learned about Helen Keller, but we didn’t learn what Helen Keller went on to do after she spelled out water on Anne Sullivan’s hand. So what was I supposed to think about what my life would be like as a female adult with a disability with such a limited picture of that story, or with no example of any other such successful female with a disability? (The answer is that Helen Keller went onto fight for causes such as socialism and women’s suffrage, but for some reason, that’s not how history likes to frame Helen’s story. It would have made me feel a lot better knowing that, and not just leaving Helen at the water pump.)

When I think of the brave feminists who fought so hard for birth control and equal pay decades ago, I wonder how many people with disabilities were part of those conversations. I worry that because of how people with disabilities have been desexualized throughout history that maybe they weren’t. Still it seems to me as though those of us with disabilities, and particularly people with developmental disabilities, aren’t taught enough about safe sex. As women with disabilities, are we being considered as part of the #metoo and #timesup movements, especially as part of a demographic group that experiences higher levels of sexual assault and violence? Perhaps, but I don’t think we’re visible enough.

The same problem applies to equal pay for equal work. The Lily Ledbetter Fair Pay act made it so that women could seek legal action if they found out they were being paid less than men for the same job. But, people with disabilities, both women and men, it Is still legal for them to be paid less than minimum wage. These are two examples of issues facing women where progress has been achieved, but too often NOT for women with disabilities.

It is because of these issues that women with disabilities have such an important role and must remain strong voices within the disability rights movement. My belief is that any action towards progress is a worthwhile action. The same issues facing women without disabilities often times become more complex when faced by women with disabilities. And having the voice of women with disabilities as part of the movement may create stronger solutions for challenges facing all women in general.

 

Originally published March 6 2018