Unemployment: Making it Work

Unemployment is a weird little monster. Some days are good, you apply for jobs, you clean the house, and you work on projects. Other days are not so good; those are the days when you feel useless. When you don’t want to do anything but sleep and you are sure that you are never going to work again. For me the bad days are even harder. For me, on the bad days, it is not just the stress of the bills that still need to be paid, or the loneliness of the days spent by myself. For me, each day that I am unemployed it feels like a threat to my Independence, a threat to everything I have worked so hard to overcome.

Independence is a capital letter word in my vocabulary; growing up it was the most important thing, and to some degree still is. It was the reason for everything; for the hours of physical and occupational therapy, for the almost countless surgeries, for the IEP’s and the other three letter acronyms in my life (MRS, AFO, SSI, CIL). Independence meant that I had made it, that I had shrugged off every doubt, every low expectation and I had made it. I had survived, I had overcome, and I had beaten my disability.

Now on the bad days, I feel like that independence is slipping away. I know it has only been a month, but I am starting to worry about what I will do if I don’t find another job; if my unemployment runs out and I find myself depending on Tom for everything.  I depend on Tom for a lot already, he is my main source of transportation, but I have always had my own money. I have always paid my own bills and been able to buy the things I needed or wanted without having to ask someone else for it. 

I am also starting to feel trapped. I cannot drive, I live too far to access public transportation and my interaction with others is now limited to the ladies in my weekly quilting class, Taden, the cats and my husband who has been working as much overtime as possible to make up for my lack of income. On the bad days, I feel lonely, friendless and pathetic.

In order to keep the bad days at bay, I am trying to stay busy. I drag myself out of bed even if sleeping all day seems much more appealing. I have my coffee. (I am quickly becoming an addict, something I never managed to do while I was working in the traditional sense.) I spend the morning writing and looking for jobs. I am currently working on a Children’s book as well as a narcissistic, non-fiction novel based on this blog, both of which I intend to e-publish. In the afternoons I focus on my other creative endeavors. I have set up a website where I can sell my photography, and I am working on new quilts along with setting up an etsy site to (hopefully) sell them.

Of course there is still that little voice in my head telling me no one will buy any of my work and that all this time will have been wasted; but I took a crutch to her teeth last week, that voice is mostly garbled now.

I have no idea if any of this will amount to something, but it keeps me in control of my situation, it keeps the fear and isolation at bay. Plus, if this does work out, what better way for me to define Independence than by making a living on my own terms, my own talents?

If you are interested in checking out my photography please click here. If you can’t buy, leave a comment. I would love to hear your feedback.

I Am a Hypocrite: Reason #461

I have a confession to make, or perhaps it is more of a dirty little secret. Those of you who have been reading this blog for any length of time (or know me in person) probably have me pegged as a person who is independent; the kind of person who takes the bull by the horns, fearlessly states her opinion and is confident. But really, I should be booked for a Starburst commercial because I am, in fact, a rolling contradiction.

For all my talk about being as independent as possible (something that is different for everyone) and confident about whom you are; I am terrified to travel alone.

I believe that there are many reasons for this phenomenon. The first being that I have never really been alone, even prior to my birth I was kicking it with my wombmate (pun totally intended). Having a twin makes a person fiercely interdependent; where one falters the other succeeds. She was by my side for most of my childhood, and when she wasn't I was with friends. After high school, there was college; and with it came a shiny, new set of roommates. After college my best friend moved in with me and by the time he left for Denver, I had moved in with Tom. Tom recently went on a 10 trip to go hunting and I literally did not know what do do with myself. That ten days, is the longest that I have lived alone in my entire life.

The second reason that I hate going anywhere alone is because I am a bit of a control freak, which, I assure you, is not a very convenient or desirable character trait to have when you have a disability. I hate when I am not in control of things. When I go out on my own, I most often give control to the Paratrasit System where I live. The rules are that a scheduled ride may arrive up to twenty minutes after it is schedule to arrive before it is even considered late. If it is later than that, well, there isn’t much you can do about that either. Monday night, I had an event to attend at a local coffee shop after work. Usually, I plan to bring a co-worker with me to such functions, but none were available. I was on my own. It started at 7:30 but I wanted to get there a 7:00 to settle in. (Go to the bathroom, grab some coffee and find an accessible seat.) I scheduled my ride at 6:00 which gave me a full hour to complete what is about a 4 mile journey. Plenty of time right? Wrong. My transportation arrived an hour late. I thought that would be the end of it, but I was wrong again. When I went outside to meet the driver, he had two passengers to unload and wasn’t even sure if I was on his schedule. So he unloaded them, went inside to go to the bathroom, then came out, closed up all the doors to the van and then checked to see if he had me scheduled (he did). So, it was another 20 minutes before I was in the van and on my way.

He finally gets me there and insists on pushing me inside, even though I tell him I have it. The event is a poetry reading and the door opens up at the side of the small reading space. The driver makes no effort to be quiet as he pushes me through the door only people in wheelchairs have to use and tells me: “Here you are! Have fun!” in a loud voice. Everyone is staring and the person who was reading has stopped mid-sentence. I apologize, and got to get a coffee.

The third reason that I hate going anywhere alone is that I become hyper aware of the fact that I am different then everyone. Let's be honest, people stare at me all the time, and not just because I am the hottest thing they've ever seen. When I am with someone else, however, I honestly don't notice it. I am too focused on talking to the person I am with to pay attention to the gawkers. With no one there for me to focus on it becomes nearly impossible to ignore the stares. I go to the counter to order a drink. The surface of said counter is about level with my forehead. I crane my next looking for staff, but see no one. So I wait, as I do I can feel the eyes of the people at the tables wonder towards me. I begin to feel hot. I want to shout out to get the staff’s attention, but I don’t want any more attention from the people staring. I can almost hear their thoughts. How come no one is helping her? One thinks. I don’t think they can see her. Another observes. Is she okay?Ponders a third person; staring at me over the lip of the white ceramic mug. Of course she is okay, thinks the only rational person in the room, she’s just waiting for coffee. I decide an “Excuse me,” is an order, but it is to no avail. I am about to abandon the coffee altogether, when a women on her way to the bathroom gets the attention of a staff member, who takes my order and then at my request, secures the lid for me. People are still staring.

I take my coffee and roll back to the poetry reading. The girl I interrupted is finished reading. Someone new is up. I park my chair on the peripheral of the space, not wanting to interrupt, be in the way, or be stared at as I take my coat off; which, because I’m going for silence takes several minutes. I curse my coat for it's freakishly loud zipper and all the Velcro (So much Velcro!). Finally, I liberate myself, but I'm so hot that the coffee doesn't really appeal to me anymore. I try to sit back and enjoy the poetry. I try to feel like I am part of the writing community, but people keep glancing at me out of the corner of their eyes and there is nothing to do but look right back. I feel left out, I feel excluded, I feel hostile, but most of all, in these places filled with people, I feel alone.

When my friend, who is neither a coffee or poetry lover, finally arrives to pick me up, I am relieved. We wait for the person reading to finish and quietly leave. It might just be my imagination, but I can almost hear the entire room sigh in relief as the door closes behind us.

Celebrating My Heroes on the Anniversary of the ADA

Today is the 22nd Anniversary of the Americans with Disabilities Act. I find it baffling that I lived for 8 years before it was passed and I know that my life would be so different without it. Everything that is hard today, finding a job, finding a place to live, getting transportation would be nearly impossible without the ADA. But a successful and happy life with a disability is not just about ramps, automatic doors and equal opportunity, at least not for me. I am grateful for the ADA, but even with it, I would not be where I am today without the people in my life. My big sister, Cassandra, calls me her hero. She says she is proud of everything I have accomplished. This always makes me smile because for one thing, it means so much more coming from my big sister than some stranger on the street, but also because she seems to forget that I wouldn't have accomplished nearly as much without her and everyone else who has helped, supported and encouraged me along the way. 


Today, thousands of people will celebrate the ADA, but I wanted to take a moment to also celebrate my big sister and everyone else along the way who has been there for me. You guys keep me going and keep me smiling, even on the bad days. This post is for you.

Last week my friend Ava, who is awesome, told me to check out the blog of a friend of hers named Mia Mingus. I love reading other people’s blogs, especially when they relate to the disability experience; so I checked out Leaving Evidence and was immediately moved. In the post I read she was talking about inaccessibility and how it is so much more than just the physical structure of a place that makes things inaccessible to those of us who live with a disability. She says “The weight of inaccessibility is not logistical. It is not just about ramps, ASL interpreters, straws and elevators…it is an echoing loneliness, part shame, part guilt, part constant apology and thank you.” I can’t remember the last time I have read something and immediately felt as if the author was talking to me and completely understood me.

My whole life I have repeated two phrases over and over again every day. They are “I love you.” and “I’m sorry.” I say “I love you” because life is fragile and too short and I don’t want to leave this world without letting people know how much they mean to me. I say “I’m sorry” at some point or another if I feel like I am inconveniencing other people. I miss my paratransit and have to call a friend because waiting for the next one to get here will mean another hour in the heat, I say I am sorry. At a wedding,  a stranger has to get up and push in your chair so that I can get by, I’m sorry. I drop something and can’t pick it up, I am sorry. I miss an important call because I can’t get there before it stops ringing, I’m sorry. I fall, I’m sorry. I wake Tom up because I can’t roll over, I’m sorry. I need help with my shoes when I visit my friends, I’m sorry.  my sister has to help me go to the bathroom at a party, I’m sorry. And it isn’t just a word. I really am sorry.  I feel guilty, and if someone shows even the slightest sign of annoyance at my requests for help I will avoid them because I am sure that they hate me and I never want to inconvenience them again. Eventually, I start to imagine these signs, and I begin to avoid asking for help. But I can’t do that, not for long anyway. I don’t want help; I need it, like people need air. How long can someone hold their breath? Then they feel bad, for making me feel bad and now there is this giant thing hanging in the air between me and them and it’s called “I’m sorry.”

At my birthday party this year, there were four of us that needed help at various points throughout the night. This help was provided without question, without making a huge show of things, and each time each of us said “Thank you” and “I’m sorry” more than once. At one point my friend Stephanie came up to me and said, “Everyone keeps apologizing and thanking me, make them stop.” But I couldn't, because if I did, it would only inspire guilt which is usually followed by “Really, I am so sorry. I appreciate your help.” This, I think, was the one thing she didn’t want to hear.

I am so lucky to have the friends and family that I have. People who help so easily, who never make me feel guilty when I need something. Who will, in the middle of a party, will put down a drink quietly without a roll of the eye or a sigh of annoyance that might make the guilt begin to bloom; who find the humor in my squirrel bladder and slow steps, not the inconvenience. Who answer my “I’m sorry” with a “yup”, or a “no problem” and most importantly, a smile. These people are my heroes.I don’t think they realize that a large part of what I have done and what I will do is because of them. Because of their willingness to help, and because they never let what I need get in the way of who I am or what I mean to them. So for those of you that have carried me up countless flights of stairs, driven me to what amounts to thousands of miles, taken me to a million bathrooms and so much more, I’m sorry. Thank you, and most importantly, I love you.