Day 336:Thank you, Mrs. Alsup

When I started school in Tennessee after moving from North Carolina I was miserable. I had just lost all the friends I had worked hard to make in North Carolina , and I instinctively   worried that the civilian school culture would be far less accepting of me than the base school.  In later years I would find just how accurate that fear turned out to be  but the fourth grade was wonderful. Mrs. Alsup was and still is my favorite teacher from elementary school.She  and Mrs. Ryan , my in school aid,did everything they could to help me succeed.  When Mrs. Alsup had the  idea to pair some of my rowdier classmates with  me in a  peer helping system in class, she asked my parents but she also asked me how I felt about it and made it clear if I said no the whole  project was scrapped. I said yes and it turned into one of the most fun and enlightening things I have ever done. I  think she was one of the first adults to give me full veto power over an idea and mean it. This means a lot because I’m 31 now and still not granted that basic level of autonomy  by some people. I told you all this small stuff to get to the big thing, the thing she probably doesn’t even realize she did, Mrs. Alsup saved my life.

Fast forward to the fifth grade  As wonderful as the fourth grade was that’s how awful the fifth  grade turned to be. The teacher was great, my aide that was evil. Mrs. Ryan had decided to go to school to be a teacher and so I was paired with a new aid entering my fifth-grade year. This woman was verbally and/or  emotionally abusive every single day . She teased me and called me names because  I needed LOTS  of repetition to grasp math concepts. She yelled at me and made  me cry because bladder spasms I couldn’t control  made me have accidents at least once a week, which of course, she had to clean up. She chastised me about my weight, even though I was only eleven and had only just started to come close to weighing the same as other kids my  age. For a while, I wasn’t allowed to play on the playground because she didn’t want to push my chair through shavings. I was permitted to read outside during recess but I think  the other kids thought I was in trouble because I  was sitting with teachers and didn’t talk to me , meaning the baby friendships I had started the previous year fell apart fast.

Why didn’t I tell my teacher? She and my aid were friends outside of  school and I didn’t think she’d believe me. I know that I should have told her anyway. I could’ve gone to Mrs. Alsup, she would have listened  if my new teacher wouldn’t . At  some point that year I seriously considered suicide. The reason I didn’t try apart from worrying about my parents and sister, was the  love and time Mrs. Alsup put into me .

Day 335: Windows 10, Suffragette and Mary Poppins, or How Glynis Johns Introduced Me To Femenism

Earlier this week a power surge during a rainstorm killed the power supply for my desktop computer. The original  plan was to replace the power supply  now and get a new laptop around November/December. Dad came home with the power supply and a new gamer’s laptop .Uncle Paul is going to fix and then inherit my desktop because his laptop has seen better days. If anyone reading this is thinking of upgrading to or starting with Windows X it bears little resemblance to the previous incarnations of the Windows operating system, For instance, it works best with touch screen capable computers, which I didn’t realize I had until Oz, my boyfriend, tapped the screen to take a picture while helping me set it up. Color me floored.  My parents have always been fairly tech savvy, I remember hanging around the net on a  dial up connection via Prodigy when I was eight but touch screen computers and tablets  were things I never thought  I would see.I still need to transfer my speech recognition software to this computer but that’s a fairly simple thing.

I got my first DVD from Netflix this week. Suffragette.  I knew the suffragette movement in Britain had been more militant than its U.S. . I knew vaguely of hunger strikes, women jailed, broken shop windows and small bombs in letter  boxes on street corners. I knew of these things first from the unlikely medium of a Disney film. Remember Mrs. Banks from Mary Poppins? She  was part of the British women’s movement and a lot of her dialogue makes references to it. I found out recently that, when she approached for the part, Glynis Johns almost insisted on her own song in the movie, and that’s how  “Sister Suffragette,”was born. It was because of that song that I first asked my mother what a suffragette was, (I think I was six) and from there I learned about Elizabeth Cady Stanton and Susan B. Anthony and the notable women from the American movement.

It was some years later, middle school at least, before I realized that the dramatic extreme things Mrs. Banks had said  were also real. Real things that had happened to real women. Watching Suffragette I saw it and was horrified and humbled all at once. Shocked and stricken at the lengths these women went to reach a goal my generation  and many before me take for granted.

This  coming  Presidential  election has caused me a great deal of sadness and truthfully I had almost decided not to vote this year.  Seeing that movie reminded me that my place in the electorate was bought with a blood price and I will not scorn such a precious gift , no matter how undeserving the candidates.

Day 334:So A Podcast is More Work Than I Thought

I told a friend of mine about my idea for Gimp Radio… She was ecstatic and immediately sent me an article detailing 27 steps for getting a podcast off the ground and recognized by iTunes. It was a lot of information and I think I may have undertaken a much bigger project than I realized but I’m still going to do it. Another friend reminded me of something Mother Teresa once said: “we can do no great things, only small things with great love.”

Gimp Radio is my small thing. It’s going to take some time but it’s worth it. The disabled community deserves to have its voice heard its concerns given as much weight as those of our able-bodied neighbors. Historically  we have been told that in order for our concerns to have any validation we must convince an able-bodied person to act as our voice first, it is 2016 and that is a total load of crap. We deserve to have our own stories told in our own voices. That is why I believe Gimp Radio is so important. In the 21st century, I have seen many disabled people try to minimize the space they take up, I have caught myself doing it numerous times. I have the right to be here, I have fought and struggled mightily to master skills that many people take for granted and yet I still apologize for my existence, I have changed routines in my life to better accommodate other people but when I stop and think about how many of those people would change their routines regularly to accommodate me the list is woefully short.

If anybody asks me who my biggest advocate is the answer is always going to be my sister. When we were teenagers and I apologized for needing help, which I did a lot, she would tell me to stop apologizing for things I couldn’t change. She got to the point where if I apologized she would refuse to help me for 5 min. and every time I tried to apologize after that she would add a minute. She still does that and it still drives me crazy but I love her for it.

Gimp Radio is coming. It may take me a year or two to work out all the details but it is coming. I will be overjoyed if five people I don’t know listen to it because even five people make it worth doing again and again and again. If I can fundamentally change the way five people view, interact with, speak to, the disabled community then they can go on and change five more with their own influence and they can change five more, etc. People believe that social revolutions are the results of massive change but every great movement, every revolutionary act, started as a single person doing a small thing with great love.

Author’s Note: The friend who reminded me of Mother Teresa’s words is my friend Beth who I’ve  since known since summer camp and who was also my very first college roommate several years after summer camp . She writes over at In Case of Fire, Use  Stairs about many things including her faith and her take on life with a disability.

Day 333: Gimp Radio or Help Me Name A Podcast

I spent Sunday afternoon listening to National Public Radio and a thought struck me. We, as a community, have always had unique struggles and challenges which we talk about amongst ourselves and our close family and friends. We feel hurt, angry, and sometimes bitter when the able-bodied world at large seemingly ignores our struggles and difficulties. Sure, the people closest to us know and hopefully, try to understand our perspective to the best of their ability and they might pass some of that information on to other people they know but what if the disabled community as a whole had a radio show, a podcast where a group of people with varying disabilities explained and/or discussed social trends and current events that affect people with disabilities. For example one of the first topics could be what does accessibility mean for you? Accessibility means different things to a wheelchair user  then it would to someone who is blind or deaf or is on the autism spectrum. If you asked an able-bodied person the same question chances are they would assume that a wheelchair ramp, grab bars in the bathrooms and maybe wider doors and an elevator makes a place accessible.as far as I know none of the movie theaters in the area in which I live have audio descriptions for the blind to describe the scenes in between the dialogue even though I know technology with exists that can do so. Right now this is just a seed idea but if it takes off I would love to have contributors from around the world, to learn what disability culture looks like in other countries. Right now I’m trying to come up with a name for this podcast. Oz came up with Word On Wheels which I admit is catchy but I would like to have a name that is more inclusive of all disabilities so I hesitate to use Gimp Radio or Crip Radio which are the first two ideas to cross my mind. Another reason I hesitate to use those is because some disabled people might be offended by my using them even though I only mean to reclaim the words that able-bodied people have used as slurs against us. At this point about I will take any and all suggestions, what would you guys name it?

Day 329:Reproductive Rights Belong to the Individual Woman And That’s How It Should Stay

blue_roseMy blog doesn’t have a reputation for covering controversial topics. I usually go out of my way to avoid them here, this does not mean I don’t have opinions on these subjects just that I usually do not feel the need to voice them in a public forum. Today browsing the WordPress Discover page I came across this  . post written by Dr. Jen Gunter an OB/GYN who has provided women with abortions after 20 weeks. The post is absolutely heart wrenching. I remember when I was a freshman in college living on campus there was a pro-life group who had a demonstration permit for three days outside of our student union. We had to walk past a very graphic set of photographs of late-term abortions blown up huge and put on poster board, it was awful. I was angry but I wasn’t angry at the women going through with the abortions. I was angry at the pro-life people… How dare they take what should be a very intimate decision and an extremely intimate pain and blow it up large for strangers to see, scrutinize, and pass judgment on.

 

I admit that at least once while passing by the pictures on my way to class, thinking that in this modern-day and age it would have been fairly easy to get an abortion prior to 20 weeks, why did they wait? Dr. Gunter’s post points out that like many things in life it is rarely as simple as that, my 22-year-old self is hanging her head in apology that she was ever that naïve or judgmental. In fact 31-year-old me remembers those pictures and quakes in fear. Every single woman with cerebral palsy or other similar conditions that I have known is automatically classified as high risk for the length of her pregnancy even if our overall health is good. It’s why my dad would rather we adopt, what he doesn’t understand is that being a birth parent is  considered within the rights of the disabled adult just like anything else so long as the child is in a safe environment, being an adoptive parent is not. Even with an able-bodied spouse or partner no one is legally required to let me raise a child not of my own blood. There are few if any state laws and no federal protections against discrimination for an otherwise fit couple if one or both of them happen to have a disability. One of Dr. Gunter’s patients asked her “what are we gonna do with the crib?” Goddess save me from ever hearing that question echoed in my own voice.

Day 328: So Your Friend Has Just Become a Wheelchair User, Now What?

handicap symbolSomeone I know via a Facebook group has a friend who’s in the hospital recovering from a car wreck that has turned him into a paraplegic. This group has absolutely nothing to do with disability but she mentioned it anyway for no other reason than it’s a group full of amazingly supportive women. Even though my disability isn’t a spinal cord injury I have been a wheelchair user most of my life so I gave her my advice on how to support him based on my own 30 years of disability and the lengthy conversations I have been fortunate enough to have him with people who do have spinal cord injuries. It occurred to me this morning that some of the things I’m aware of are not common knowledge for most people so I decided to expand my one or two paragraph explanation into a full blog post because maybe there are other people who could use the information as well.

 

  • The world as they know it is over. I am not trying to be cynical or pessimistic, from the moment they got into that accident nothing will ever be the same again. They have to relearn how to get dressed, how to put on shoes, socks, pants. Everything you thought you had down pat before you started kindergarten is brand-new all over again. At some point they will probably want to hit things, throw things, etc. as long as they are not doing major damage to themselves or you let them.
  • They really aren’t exactly the same person you knew before the accident.Implying that you see no difference whatsoever  may upset some people because everything in their life has taken such a drastic change it may feel as if you are denying the obvious and even if you are meaning to be supportive it can feel patronizing.  Try something like”I know your heart is still the same and the rest is just an oppourtunity for creative  solutions.”
  • People they thought were their good friends will suddenly disappear. They will disappear because the new reality is scary and maintaing a friendship with someone in a chair can feel more labor intensive. I’m not going to tell you this isn’t true. Everything requires way more thought and planning when you use a chair. Is that place you used to hang out at all the time handicap accessible?If you didn’t know the answer before you’ll discover very quickly that the answer is really important now Being a good friend definitly means paying attentio to things like accessability.
  • If you say you’re coming over do it. Remember what I said about people disappering? This is how it starts…friend says they will come hang with newly disabled friend soon except soon never comes. When friend is asked why  they haven’t been around at all in six months excuses often abound working over time no gas etc. I’m not saying these things are never actual reasons but if you have to miss seeing them call and explain and preferably have a rain check date to reschedule. If they  don’t do thay then chances are good you are being avoided because the friend is uncomfortable around you. Do not be that person. You may think it won’t bother them that badly but  I can tell you from my personal experiance, do it often enough  and  no matter what your reason/excuse they will start thinking its better not to ask you to hang out because you are just going to find an excuse to ditch them.
  • Be prepared to become an advocate. I  know no onr asked if you wanted the job and disabled folk can and do advocate for themselves but being in a close relationship  of any kind with a disabled person means you will probably find yourself  being an advocate at some point. For instance before Oz, my boyfriend met me broken sidewalks, sidewalks with no ramps, or no sidewalks at all, were barely  a blip on his radar. The presence or absence or state of disrepair  didn’t affect him. Four years with me has made it a pet peeve. Same thing can be said for service animal access. Disability can make us feel alone in a world which only begrudginly accomodates us. We aren’t asking people to fight our battles for us but rather to stand with us.

Day 327: Why I Take Issue With Bathroom Bills, and It’s Probably Not the Reason You Think

 This post has been coming for weeks, ever since North Carolina passed the bill restricting transgendered people to the use of the public restroom which matches their birth sex instead of their current identifying gender. Laws like these have sprung up all over the southern United States*and they are totally and completely wrong. The bills are supposed to protect against pedophiles and rapists, that language suggests that anyone believes a transgendered person to be inherently criminal. Yes, a transgendered person could also be a criminal but to assume they are criminal because they are transgendered is no different from assuming criminal behavior based solely on skin color. What it really is is plain fear mongering and bigotry.

 

I have never been able to use the bathroom by myself because of the limitations of my disability. My dad stopped having one-on-one father daughter lunches with me when I was 10 years old because someone accused him of being a pedophile for no other reason than helping me to the bathroom. 20 years later my boyfriend has to do the same thing and though no one has called him a pedophile yet he still gets odd looks if the place we are shopping/eating at does not have a family bathroom because no matter which we one of us is seen as being out of place. What is he supposed to do, let me have an accident? Are we not supposed to go out as a couple? The hell with that.

 

The people who support bathroom lawns are exactly the kind of people who assume the worst when the guys in my life are just trying to help me get necessary things accomplished. I would rather receive help from a person I know no matter what gender or sex they identify with them on that I don’t any day of the week. In the 1960s it was water fountains, lunch counters, and public transportation but it wasn’t really about any of those things. It’s about fear, it was then and it is now. Transgendered people are no more monsters under the bed than are people of color or immigrants.

To the people who believe that laws like this actually protect people I say consider for a moment that the word “different” does not always equate to “evil”. Be brave . I know it’s hard but I believe you can do it.

  • As far as I am aware laws like these only exist in the southern states.