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.

Day 326:Outlander, A Die Hard Fans Defense of Characters Besides Claire and Jamie

I found the Outlander books in my late teens or early twenties amd fell in love. Seriously, I have at least three different sets of the books and that doesn’t count my Kindle copies. The only other book series I’ve ever done that with  is Harry Potter.I love Claire and Jamie. I love everyone else in their world too. Colum and Dougal, Frank and  “Black Jack ” Randall and everyone else. Yesterday I saw this post .

 

The writer reffrank randallers to Frank Randall as a twit and I found that this bothers me immensely. Frank is not Jamie but he does love Claire very much, if you need proof look no further than the fact that he raised a child that he knew was not his own. He and Claire’s relationship may be strained but he throws himself into loving the little girl with his whole self. His love for Claire is definitely not the forest fire blaze that Jamie sometimes  is but that is because Frank and Jamie are two very different people. You don’t need a bonfire  to heat a house a fire contained within a fireplace is still fire.

 

In fact it is these two vastly dissimilar relationships that put the Outlander series into a weight class entirely its own. I’ve never seen another series in which the female protagonist has two relationships, both of which last decades, in two different centuries.  I feel terrible for Frank because he has the misfortune of having a face that is an almost exact copy of “Black Jack” Randall, a truly horrifying person who finds immense pleasure in torture and rape of any person who he wishes to exert power over. Frank’s only fault as far as I can see and bearing in mind that in spite of having the entire series several times over I am still less than halfway through, is being a direct descendent of Black Jack which really isn’t his fault, nobody gets to choose their blood relatives after all.

Outlander-S1-Colum-MacKenzie-Gary-Lewis

I admit that I started reading for Jamie and Claire and Frank and romance and sex. Then  met Himself and was totally and thoroughly invested in the series and it wasn’t even halfway through the first book. Colum ban Campbell MacKenzie is chief of the MacKenzie clan and also has Toulouse-Lautrec syndrome a degenerative disease that is similar to osteogenesis imperfecta which also causes sterility, a fact important to the plot of the first book. Anybody who knows me for a considerable length of time can tell you that one of my biggest soap boxes is the invisibility of the disabled body in media. If a disabled person is shown in is often in the role of saint, martyr, or else curiosity.Colum Mackenzie is definitely not any of these. Warped limbs or not no one would ever mistake him for a shrinking violet  and crossing him isn’t wise.

He refuses to appear ashamed of his disability even though he holds the very common belief that his disability  is punishment from the Devil. When a tailor takes it upon himself to make him a coat that would hide his twisted legs Colum holds the man at knife point  and demands a standard mens frock coat which falls just above the knee be ready the next day , I  cheered aloud.

Outlander 2014

I love to hate Black Jack. He is so complicated and nuanced. He is evil, absolutely no argument there,but there are no physical tells no warts, disfigurements etc. in fact he is very handsome, his speech polished, his manners charming as the situation requires. The only physical difference between him and Claire’s Frank is that his hair is long enough to tie back where Frank’s is short. If Claire had not met Black Jack whilr in Jamie’s era I don’t believe  her and Frank’s relatiomship would have suffered as deeply when she came back. Think about it by the time she returns she and Jamie has both been assulted mutiple times by a sadist who wears the exact face of the man she has just returned to, that would be enough to give anyone nightmares. ‘

Outlander is Claire and Jamie’s story all day long but dismissing supporting characters is a huge mistake.It narrows the focus of a complex story that is about so much more than just the two leads and reduces  it to the level of a drugstore paperback romance.

outlander cast

Author’s Note: None of thee images are mine.

 

 

Day 325: People with Cognitive Impairments Make Me Uncomfortable, Or Disabled People Can Br Jerks About Disability Too

pillar8-thought-and-art-vitruvian-man-leonardo-da-vinciNondisabled people often think that if there are two or more disabled people within a 50 mile radius of each other we all know each other by default and must be best friends. I understand the basis for the assumption, people who live in the same area might receive some form of therapy or other community services to help with their disability at the same place. This is a logical assumption but it is unfair and limiting to assume that just because disabled people are thrown together by circumstance to assume that everyone knows everyone else is more than just a passing acquaintance. More often than not strangers will assume that my boyfriend is actually my brother unless they have just seen us kiss each other. People have expressed surprise that I’m not dating someone “like me,” by which they mean someone who is also disabled. I have dated both disabled nondisabled people and I find the assumption that I would or should”stick to my own kind” insulting on several levels.

 

That being said the fact that I am part of the disabled community does not absolve me from my own narrow minded behavior. While the medical community will never call me physically healthy because of my disability and I admit to struggling with depression daily one of the boons granted to me was an extremely sharp mind. I have a 119 IQ. 120 is considered the start of the genius bracket. I have a ridiculously good memory for people’s names especially if I meet their pet at the same time. I have been told that I am good at mimicking accents and I know that picking up languages and writing are not difficult for me at all. In short I am a very good communicator and often times find myself uncomfortable in my dealings with those whose chronological age does not quite match up with the level at which their brain processes information. I found it especially difficult to navigate at summer camp where many of the people had cognitive differences on top of their physical ones. I know now that it painted me as cold, uncaring, and stuck up to some of the other campers. To those whose feelings I did not realize I was hurting I am truly sorry, it was never, ever intentional. It has not been until just this year that I started to feel less awkward about bridging the gap between myself and cognitively disabled people. Sometimes it’s easier than others but I do it anyway because just because someone processes things differently than I do doesn’t make them any less worthy of my empathy, appreciation, or understanding.