Displacing Inspiration.

Early last month, I went with a couple co-workers to a work related convention in Traverse City, Michigan. This was my first conference in a few years, and I usually end up having issues on work related trips, so I was not excited to go. But as my co-worker needed some support and technical assistance, I took one for the team. I have to say, as far as conferences go, it was one of the better experiences I’ve had; at least as far as physical accessibility was concerned. The conference was held in the same hotel we were staying in, so there was no walking on cracked sidewalks and uneven surfaces; no rushed taxi ride where I worry about how my chair is being handled and no getting lost due to bad or incomplete directions or addresses. Everything was right there. It was easy and it was accessible.

However, it gave me a weird vibe. There is a saying in the Independent Living Community, “Nothing about us, without us.” This conference was very much about people with disabilities; specifically in the field of employment. But the majority of the conference attendees and presenters were people that served people with disabilities, and not people with disabilities themselves. Throughout the conference, people with disabilities were described as “inspirations,” as people who “never give up,” who are “always” happy. I kept hearing the same phrase over and over again. “When I am having a bad day, when I am feeling down and out and just want to give up I think of (insert the name of someone they know with a disability here) and I don’t feel so terrible anymore”.

I wondered how that was supposed to make me feel. I mean, I know they intended it to have a positive meaning, but all they were really saying was, “At least I don’t have a disability, because then my life would totally suck and I would have a real reason to bitch.”

Being an inspiration to others is a great thing, there is no doubt about that. I know I have inspired several people in the past; maybe they are inspired because I do always try to see the humor in everything, or because I figured out how to sew with one hand, or because I have completed National Novel Writing Month twice. I certainly hope it’s not because I dragged my ass out of bed this morning and went to work, because there was nothing inspiring about that scene. And if you don’t believe me, you can ask my husband.

Let me be clear. My life is not horrible. It is not a tragedy. I do not spend each and every day struggling. The act of getting out of bed and going to work should not be inspiring. Some people assume that my life must be inherently harder than yours but it is not, because humans adapt and because I don’t know any other way, but my way.

If I inspire you, that’s great; but please let it be for the right reasons. Getting out of bed? Easy. Writing a novel in a month? Hard as hell. Please don’t compare my life you your worst day. My life is amazing. I have the world’s most supportive and amazing friends, a husband who loves me, a dog that ADORES me, a good job that I enjoy, a number of talents, and an amazing family that would do anything for me. So I have a disability. It’s not such a tragedy. That being said, I am not always happy, I am not always positive. Sometimes, I am pissed off that I have to live with a disability while so many others get a free pass. Sometimes, I am tired and some days literally hurt. These days happen. They do not make my life any less amazing or any more inspiring. They just make it real.

I hope that if you have someone with a disability in your life that you remember: They are not an inspiration. They are a person. Sometimes, they might do things that you think that you couldn't do. Sometimes they might do something pretty amazing, but mostly they are just people. Try not to put us up on a pedestal, we're apt to fall off. 

What's Wrong with me? Nothing, I'm Awesome.

Language is dangerous. Writers have always known this. As Edward Bulwer-Lytton said, “The Pen is mightier than the sword.” All of us have heard the phrase, but I think few of us tend to give it much weight. Words, whether they are written are spoken, have a lot of power. They have the power to create change, to inspire, to empower; but they also have the power to destroy, to break down. 

In college, I began using the word cripple to describe myself, mostly for shock value. It was an ice breaker in a way. I thought that maybe by calling myself a cripple it might put others at ease, they wouldn’t be so worried about saying or doing the wrong thing. But I also started doing it because I was sick of the word disabled. To me disabled is the nasty word, not because of its definition, but because the word disabled implies that there is something less about me, something I am not, or cannot. It compares me to everyone else, and with those odds stacked against me, I’ll never come out on top. 

The word cripple, though traditionally frowned upon by the politically correct, has a similar definition to the word disabled, but when I use it I don’t feel as though I am being compared to someone else, or judged by some ridiculous standard. Plus, it has the advantage of making people a little uncomfortable. This is only fair if people are going to ask me personal questions in public or tell me that if I pray hard enough or try hard enough I will be normal, because that makes me uncomfortable.

I am not the only person using this terminology to describe themselves. Some choose other words like Gimp, Crip and Spaz. I don’t think we do it for humor. I think it comes from two main places: the feeling of solidarity and the empowerment that it gives us, and secondly, it’s our way to fight back against the politically correct and the language that has been deemed acceptable when talking about “people like us”.

People without disabilities think that there is shame in being disabled. They try to lessen the blow by coming up with phrases like “handicapable”, “differently-abled” and “disABILITY”. They did it for us, the people with the disabilities, so that we wouldn’t feel left out or ashamed; but, I (and most of the other people I know who have disabilities) am proud to be a part of the disability culture. My Cerebral Palsy has never shamed me. What has shamed me is the way other people have reacted to it. When my principal and teachers decided I was "too sick" for the ropes course in 5th grade camp and sent me home, I was ashamed. When my teachers kept me inside at recess on field day, I was ashamed. When my mother, only one trying to be helpful, cleared a path for me in a crowded room by shouting, “She’s handicapped!” I was ashamed. My disability caused none of this shame, people did. Of course, it wasn't until I began to hear words like 'gimp' and 'cripple' and 'spaz' used by people with disabilities and began using them myself, that I realized it.

The funny thing is, as I have gotten older, I’ve noticed that even words you mean to use positively can turn against you. Ever since I was a teenager my other friends with CP and I have been using the word spaz with each other. It is a perfectly appropriate term considering how jumpy and spastic we all are.

But recently, I was with a friend looking at some pictures on her facebook page and I noticed that in her captions she often had written something like: “This is a great picture of all of us, except Liz, she looks like a spaz.” At first it didn’t bother me because in a few of the pictures, Liz did look like a spaz. But then I noticed that a perfectly lovely picture of Liz would have the same type of caption. My friend had sad Liz looked like a spaz in EVERY picture. So then I got a bit upset and asked my friend why she was being so mean, was she jealous? (because Liz is beautiful, there is no denying that.) My friend got upset and called me a hypocrite. And she was right.

The thing is, I didn’t feel like she was using the word in a positive way anymore. She had used it the way kids who weren't our friends had used on the playgrounds of our childhood, to make Liz separate, or less. Sure the rest of us could be pretty, but Liz, she was a Spaz.

Words are tricky bastards.

So maybe I don’t want to use any of them anymore. Maybe I will just take the disability out of the equation all together. It’s never been that important. Sure people will still compare my body to theirs, they might still want to know why, they might still think of me as less and they might use my differences is a reason to disregard me, and put me aside. That sucks for them, because I am Awesome. I really am, ask my friends. I can see them having this conversation from now on:

Poor Sap: So what’s up with that friend of yours anyway?
Friend: Which one?
Poor Sap: The one in the wheelchair
Friend: Oh Melissa? She’s Awesome.


So from now on let’s all just be Awesome. Mkay? 

I Work Out... Kinda.

You know you have a disability when it takes more time and energy to get on the gym equipment than it takes to actually work out.

Went to my doctor last week, she said to lose some fat and gain some muscle. Those were her exact words. Notice she did not tell me to lose weight, I guess I have become skinny-fat. Joy.

I have been using the Gym at work this week because we have a NuStep. But, I work out in the morning so I have no one to help wrestle my legs into the leg stabilizers. I timed myself today, and it took me 20 minutes to get strapped in, that's normally the length of my cardio workout. I did an extra minute 16 seconds just to make myself feel better. :/

I hate working out… well actually it’s far more complicated than that, I actually love working out, the problem is, I always feel so defeated afterwards. Even when I do cardio, I don’t actually get a cardio workout because it is physically impossible for me to get my body moving fast enough for long enough to get my heart rate up. The faster I try to go, the more my muscles tense and the more I have to slow down and tell myself to relax.

If I didn’t have a disability, or if I could afford a trainer that could tell me exactly what to do in order to get a proper work out with CP, I would be the fittest person. I get so frustrated seeing all these fun new ways to work out that I just can’t do.

Every time a google disability and workout. I get a bunch of 75 year old woman doing knee lifts and side bends. I don’t want to simply do stretches from my wheelchair. I have had enough of weight machines and dumbbells. I want a real, hardcore workout that requires a shower after. I want to discover muscles I never knew existed. Where’s the workout for all the young and sexy (or soon to be sexy) men and woman with limited mobility?  

Just Dance should have a seated version and the Biggest Loser should do a season comprised totally of people with disabilities. How hard could it be? Why is something that we are all told we need to do for our overall health, so hard for people that probably need it to most to access? If anyone has an answer I will be in the gym. At the rate I am I will burn of that granola bar I had for breakfast in time for lunch.

100 Reasons Why...

In honor of March being Cerebral Palsy awareness month, I wanted to share something I posted over at LiveJournal on February 17, 2003. I was 20 years old. My perspective on my disability has changed a lot since then, but I still think this list is at least 95 percent true. Something to think about while reading: Everything on this list came from an actual experience. Many, of those experiences were not positive, but I was able to find humor in them anyway.

Since I posted it it has been shared (with and without permission) on various disability related websites and blogs. Every time I stumble upon it I am delighted. People have taken it upon themselves to change some of the list or add to it. I think it's awesome, because it's based more one my experience than a universal one. Here it is in its original glory:

One-hundred Best Things About Having CP

1. Cool toys.
2. Free money.
3. Random guys pick you up and carry you places.
4. Always the last person to be suspected of anything.
5. Never have to wait in line at theme parks or concerts.
6. Priority housing.
7. Everyone thinks you’re sweet and innocent (even if you’re not).
8. No strangers will ever confront you because they’re afraid of hurting your feelings.
9. When you run over people and tell them it’s an accident, they actually believe you.
10. You can get people to do things like cook for you because you’re in the chair.
11. Never have to take the stairs.
12. Hills are great fun if you have a wheelchair! (At least going downhill.)
13. People always look at you like you’re an inspiration.
14. Mad arm muscles -- you can beat guys at arm wrestling.
15. Double rides on all roller coasters.
16. Some teachers offer to help you out with notes, and you can show up late for class.
17. Every time you stand up, you can freak strangers out (or get an ovation from a crowd.)
18. Enormous bathrooms.
19. Shoes are an option
20. It’s a great excuse for anything! (It’s not my fault, It’s my CP!)
21. You can make spastic sculptures and pictures to keep your friends guessing.
22. You never have to worry about finding a place to sit.
23. You end up with mad wheelie skills to impress people with.
24. When your drunk people never suspect, they just think it’s the CP!
25. Time extensions on exams
26. You never have to do anything to get attention-- people are already staring.
27. Never having to walk to class.
28. Being able to “walk” with a use of a joystick.
29. ELECTRIC WHEELCHAIRS + CROWDS = FEAR
30. Developing a high pain tolerance is never a bad thing.
31. Never having to demonstrate a problem on the board during math class.
32. If you're slow people chalk it up to your disability instead of pure laziness
33. You can burn off every calorie you eat at lunch in one trip to a non-handicapped accessible building.
34. You could go out with a gaping hole in the seat of your pants and no one would notice.
35. No matter what kind of crap you pull no one will ever kick you out of Meijer.
36. Your wheelchair can double as a shopping cart you and your friends go shopping.
37. Handicapped Parking
38. An excuse to use the bumpers when bowling
39. Boyfriends give you lots of hugs, kisses and sympathy when you fall, which is often.
40. If people drop you or make you fall accidentally, they feel so bad that you could get them to do anything-- the question is will you?
41. No one makes fun of you for tripping and if they say “walk much?” when you do, you get to say "no".
42. People go out of their way to open doors for you.
43. Going to college is a HUGE deal, if you go everyone around you is amazed.
44. Parents brag about how “strong” you are.
45. You get to kill stereotypes on a daily basis.
46. You always have a lap to hold stuff on.
47. People part like the red sea when they see you coming.
48. Being bad at sports is a given, so as long as you attempt to do it, people are impressed.
49. You have more life experiences than most people you know.
50. Handicapped seating is usually in the front.
51. Never having to take classes like gym and shop
52. You can get out in the middle of class at times.
53. You can kick or hit people and claim it was a muscle spasm.
54. Free drinks at coffee houses because the people at the counter think you’re “sweet”
55. If you break something by running into it, or over it no one makes you pay for it.
56. You can meet the most awesome people when you have to ask strangers for help.
57. Fuck with the heads of all the people that want to “save to poor crippled girl”
58. You can have your friends do your hair and makeup for you.
59. The media loves you!
60. An excuse for bad handwriting
61. Everyone knows who you are.
62. You’re never too old for piggyback rides.
63. Your wheelchair makes a good walker for your injured friends.
64. You can get all excited about stupid stuff and people just think your “cute”.
65. You never have to act your age if you don’t want to because strangers think you should be immature.
66. You get to amaze people by standing and doing flips and tricks in the pool.
67. If you don’t have your chair with you, many people will scamper and offer you their chair.
68. You can single-handedly be the amusement of all your friends.
69. You get some great material for stand up comedy.
70. You learn to appreciate the small victories.
71. You are easily recognizable in a crowd.
72. You are not easily forgotte,n (Especially, if run people over.)
73. You can hide things next to you in your chair.
74. You can swallow pills without water,
75. You are popular. (Even if it is just ‘cuz you’re the “cute handicapped girl”.)
76. People like to party with you! (There’s nothing funnier than a drunk crip.)
77. You can use the word “crip” and not be referring to a gang member.
78. You never have to worry about getting your feet wet.
79. You can use those carts which the seats attached at the store, and make everyone wonder what the hell you’re doing.
80. No one ever questions your excuses.
81. Pain killers. (Paid for by someone else.)
82. Biker gloves aren’t just for fashion anymore.
83. No one questions anything you wear, do, or say.
84. Slamming into doors to open them is kinda fun.
85. You get praised for doing the simplest things. (THAT is amusing let me tell you.)
86. You don’t have to worried about people giving you wedges.
87. No worries if your pants are too big.
88. No need to take it personally when people call you a spaz. (After all, you can’t help it.)
89. You can get out of dissections in biology because no one trusts you enough to use sharp pointy objects.
90. Falling everyday gives you the skills to fall without injuring yourself.
91. No one messes with you (for fear of being run over or impaled with a crutch).
92. You can incorporated your wheelchair into your Halloween costume and go as a transformer
93. If you drop something someone else will pick it up for you.
94. You can in more circles in a smaller amount of time than anyone else,
95. You can invent fun CP friendly games (like sock tag and wheelchair skateboarding)
96. Braces make it so you don’t have to shave as often.
97. Your knees become numb after a while allowing you to kneel on hard floors or crawl without rug burns or pain.
98. Born with a talent for making “abstract” paintings.
99. You have great stories to tell at parties or gatherings. (This one time, I fell and….)
100. It just plain rocks and you know you’re jealous! (na na na na na na)

Haha. Some of these a ridiculous, but they ALL happened. Man, I miss college.

The Importance of Disability

I just want to scoop up all the little children with disabilities in the world, and say to them “Your disability does not matter, go forth and live your life thusly.” Okay, I’d probably leave out the word thusly. That might confuse them, but you get the idea.

Today, I met a young girl online and through the course of our conversation she said: “my able bodied friends are so protective of me because I am their special needs best friend.”

There was so much about that statement that bothered me. I wanted to tell her that her needs were not special, they were just hers. Every child has different needs. None of them are all that special. The phrase ‘special needs’ bothers me almost as much as ‘differently abled’. Everyone’s abilities are different. No two people are the same. Setting aside one group of people’s abilities or needs as 'different' or 'special' is creating a line in the sand that does not need to be there. I wanted to tell her that if her friends were really ‘best friends’ then there would be no need for a label and that she shouldn’t waste her time on people that consider her a charity case.

I didn’t tell her any of these things though. I didn’t tell her these things because I knew it would hurt her feelings. I knew that even though these things were true, they went against everything she believed about herself. I didn’t tell her because I don’t know her. I did wish, however, that I could tell all of this to every other person in her life.

My friends are used to my rants about the well-meaning adults that are shaping the personalities and self-esteems of children with disabilities. Usually, they are prompted by something like this innocent conversation with a little girl, who didn't know what she should tell someone who wanted to get to know her, about her disability, then was confused when I said “nothing.”

Why does this child think that in order for someone to get to know her, they have to know her disability? Does it change the fact that she loves to dance, that her favorite color is blue, that she has a basset hound named Waldo and that she thinks brussel sprouts are totally 'oogy?' No, it doesn’t. But she tells them anyway before they even ask, because she, like myself, has been told directly or indirectly that having a disability is a really important part of who you are.

I am not trying to say that disabilities are not an important part in shaping who you are. They are. It just isn’t who you are. I feel like a lot of people, both those with disabilities and without, struggle with the difference. My experience with living with a disability has made me the strong, determined, empathetic person that I am; but it is the fact that I am strong, determined and empathetic that makes me who I am, not my disability. If my experience with disability had been different I might be a different person entirely. I have friends with disabilities identical to my own, but we are very different people because their experience was different.

Often I hear, “you’re not as disabled as me,” thrown out as an excuse for why I can do some things that other people with disabilities cannot. This is a horrible thing to say either to yourself or to children with disabilities. It is a result of believing that you’re disability determines who you will be. It’s not what we can do that determines our success or our failure in life. It’s what we choose to do with what we have. I often wish that I could just talk the parents, the teachers, the mentors, the brothers and sisters of those children who are growing up with disabilities. Then I remembered I have a blog so I thought that I would share a few things. These are my opinions and they are based on my experience and observations. They are not by any means criticisms.

• Let them do everything they can do. Even, if it’s hard. Even, if it takes an hour.  Just because it takes longer doesn't mean they can’t do it. My parents put on my shoes for me until I was nine. They might still be doing it if my Step-mom Sue had not told me that she thought I could do it and made me. I sat in the hall for an hour, struggling and sweating but eventually I got both shoes on and tied, by myself; and I have been doing it for 20 years now. Though, sometimes I still need a little help and that is okay. 
• Create an inclusive environment, not just at school but at home as well. If Bonnie and Clyde have chores then Mary should have them too. If possible, give them the same chores with adaptations to make them do able. I have a twin. We both did the dishes and the dusting and cleaned our rooms. We both cooked one meal a week. By doing this you are helping all your children because you are blurring that line that too often exists between those with disability and those without. Do activities together as a family, and not just activities that are disability friendly. (see my next point) 
• Be ingenious.  At some point the child with a disability is going to come across something their brothers and sisters can do that they can’t. Help them figure out a way they can do it. Screw shoes onto big wheel pedals, take a stool to the ice-skating pond, hell, bring the wheelchair. Teach your kids to adapt anything and everything so they can do it. Teach them to be ingenious. 
• Throw ‘special’ and ‘different’ and ‘normal’ out the window. If you want, write them on pumpkins, throw the pumpkins off a bridge and smash those suckers to smithereens. They are so unnecessary. The words, not the pumpkins. 
• Get rid of those expectations. This one is for all parents, not just those who have children with disabilities. Every child is going to be able to do some things and not others. We all are have different abilities remember? Just let them try, even if you think they’ll fail. Failure doesn't hurt as much as you think it will, plus they might just surprise you.

Now if someone could kindly assist me off of my soapbox, I promise that my next post will be a little lighter and a lot more fun.

Disability: An Ingenious Way to Live

My favorite quote is from a man named Neil Marcus: “Disability is not a ‘brave struggle’ or ‘courage in the face of adversity.’ Disability is an art. It’s an ingenious way to live.” I first read it sometime during college when my poetry professor, after hearing some of my poetry related to disability, suggested I look at the work of some well-known poets with disabilities. That quote has been with me ever since.

After college, I even got a tattoo inspired by the quote and designed by my best friend:

It's a stylized handicap symbol with the word Ingenuity as the wheel. This was taken right after it was done. 

But even before I knew who Neil Marcus was, Ingenuity, process of applying new or inventive ideas to solve problems or meet challenges,  had been the key to living my life as independently as I could. All my life my other friends with disabilities would remark about how I was able to do things that they couldn’t do. It wasn’t that my disability was any less than theirs or that I was any better at being disabled. It was just that I knew that there was always a way, you just had to be willing to find out what that way was.

I think my Dad was the first person to show me how ingenuity could change something from impossible to possible. I think I was maybe three or four when my twin and I got big wheels for Christmas. Of course I couldn’t ride it, but I liked to store things in the seat and push it around the yard like a crude walker. Sometimes, when she was feeling generous, my sister would push me around on it. Then one day, my Dad used screws to attach a pair of old sneakers to the peddles. It didn’t work exactly the way we thought it would, but it was the first of many designs that eventually got me riding an adult tricycle by middle school.

Since then, I have been using a little ingenuity to get through my daily life. A few weeks ago, I came across a situation while sewing that required a little bit of ingenuity. For me, the hardest part of making quilts is the cutting. I used to do all my cutting while standing at the kitchen table, but recent back and hip pain, mixed with a new, higher kitchen table made cutting this way difficult. My solution was to take my cutting mat upstairs to my sewing room and put it on the floor, then cut on my hands and knees, giving me better leverage on the cutter and more control over my ruler and the fabric. I quickly realized that that position was helping me cut easier, but it was also putting too much pressure on my hips, so after trying a chair, and then a foot stool I finally came up with this:

A sturdy laundry basket, flipped over and covered with a towel for cushion. Please ignore my mess!

It’s almost perfect. It allows me all the benefits of cutting from the floor without putting pressure on my hips. But it does cause a small kink in my neck if I am at it for too long.

How I use it. Please ignore my hair. I think my next blog will be called Bad Hair Days, in which I post the crazy things my hair does on a regular basis.

Here are the fruits of my labor: 200 8x8 inch squares. Which now have to be cut into triangles. Oy.

What are some of your most ingenious solutions?

Wait, I'm Disabled? When Did That Happen?!?

Living life with a visible disability is strange. To the outside world you look different. You ARE different. The majority of people that see you think that your life is hard, or sad, or fundamentally different than yours. But on the inside, from your perspective, you are just the same as everyone. For me, because I was born with my disability, most days I don’t even remember that I have one. I am not saying that because I am strong, or because I have the courage to face my adversity head on. I am saying that because it is true. Because I have never, and will never know anything different, and I cannot see myself from the outside, only from the inside. And inside, I am not disabled.

I don’t even have any concept of what I look like to other people. When I see videos of myself, I am often shocked to see that I exhibit some of the same spastic movements as my other friends with CP. In 2007, I appeared in a video about the Hurricane Crutch. The crutches I use to get around, when I am not in my chair. (Awesome crutches if you are looking!)  It’s not the best example but take a look to see me in action. You will see me at about the 2:10 marker, walking. When this video came out, I was shocked at what I looked like because in my head, when I walk. I look like everyone else, only I hold a pair of crutches. What shocked me more, and continues to shock me, is the visible spasticity in my face when I am talking. I never knew it was there. Because, in my head. It isn't. And nobody had ever pointed it out to me. (Thank goodness!)

The other day, I was lying on the couch and a cruise commercial came on. I have always wanted to take a cruise. I always imagined myself trying that rock wall or that little surfing pool laughing in my bikini like the woman in the commercial. I see myself rolling the dice at the casino, hitting it big and jumping up and down with Tom as we hug. And then I snap back to reality and realize that not only would I never wear a bikini while rock climbing or attempting to surf and I probably would never hit it big in a casino. I can’t even attempt to surf, or jump up and down, and that rock wall? Doable, with lots of help, lots of grunting and even more sweating. My friend Bryan went on a cruise. He said he had to take elevators just to get from one side of the ship to the other because there were random stairs everywhere and that the elevator took forever because so many people were using it. He said the on ship excursions we not accessible to him.

There goes that fantasy.

The same thing happens to me every single day. When I talk babies with my friends and realize that I will never be able to walk and carry my child at the same time, never even be able to pick them up unless I am sitting down. When I imagine myself having this grand feast waiting for Tom when he gets home and remember that I can’t get the casserole out of the oven without help. When I think about playing with the dog outside in the snow and realize that I can’t even get into my backyard because I can’t walk in the snow.

Every single day, I am at one time or another completely shocked to discover that I am, in fact, disabled. And even though there are days when that discovery is like falling face first in the snow (sometimes it is, literally, falling face first in the snow); I think it’s a blessing. Some people can’t forget they are disabled, and when you can’t forget, you never try.

There are so many things I might never have tried if I didn’t forget: rock climbing, biking, driving, 4 wheeling, tree climbing, sewing, cooking, camping in the mountains, rollerblading, and ice skating. Some were gigantic failures, others were wonderful experiences and there are even more things I have left to try.

I credit my wonderful family, both the one I was born into and the family I gained along my journey, because they forget too, and that has made all the difference.

So for every one of you that has left me stranded in a car, house or store, tried to walk away with my crutches or tried to take the stairs while I was in my chair. Thanks for seeing the inside and I love you.

Best. Day. Ever.

Well, here I am 11 days married and I am just now updating my blog. Hard to believe it’s over. It’s impossible to really describe that day accurately. It was filled with laughter and tears of joy, with feelings of complete and utter happiness, with friends and family and it went by so fast.

I know only two things for sure:

1. I love Tom more now than I ever knew was possible.
2. The reason why there is so little information on brides with disabilities is that when the day arrives it isn’t a factor. If you have spent any time being a person with a disability, you will get through the day just like you did the day before and just like you will do the day after.

I do have a few observations, for those of you who are interested:

1. Remember my entry about the shoes? Read it. Love it. Live it. Especially if you walk at all. I was on my feet A LOT more than I had planned on and was grateful that I had gone with sneakers and not dress shoes.
2. In addition to talking to your Photographer about what photos you want taken, talk about poses. My photographer knew me and my disability and worked with me accordingly, but if you don’t know your photographer he will need to know what works best for you.
3. Corset dresses may leave bruises. I am now sure these dresses are not meant for sitting. I had to keep standing because the boning on the dress cut into me when I sat down, After 15 to 20 minutes I had to stand. Keep this in mind when shopping the dress never hurt at any of my fittings.

And now, a few pictures of the best day ever:

Here I am, walking down the aisle with the best Dad in the whole world. I used one crutch and used him to support my other side. My other crutch was at the front and I used that one for the walk back down. (my crutches have a left and right.) My wheelchair was also up front just in case, but I did not use it.

Just after the "I Do's" when everyone starting clapping. Neither Tom or I cried but I am pretty sure everyone else did.

OMG! We're MARRIED. Just after the I Do's!

This is just to show my wrist corsage. I did not carry my bouquet down the aisle. It was too heavy. I thought that might happen so I asked the florist to make me a wrist corsage as well as a bouquet. It was the perfect touch!

This is what we did with the bouquet. My mom added the cover to my chair in case I needed to use it during the ceremony. We removed it before the real dancing started, but it looked really nice.

Just a fun picture. We thought it was funny.

Me and Stephy. Without her I may have lost my mind in the planning process. I think she was more frazzled than me on the wedding day though.

This is just a cool shot my friend took of me dancing. You can see my hair pins in this photo.

Tom and I during our first dance. My legs hurt, because I was so nervous that my spasticity was on high. He is basically holding me up in this picture.

My legs we still bothering me for the bridal party dance so Tom sat on me instead. He had never done such a thing and was afraid I would drop him. I did no such thing.

Even though the "I do" is officially done, I am not planning on abandoning this blog. I will just be writing as a wife now. It's a whole new adventure. Hang on tight!

To Be Beautiful....

Holy Oh My Goodness. In 23 days, I am going to be a Mrs. That is crazy. You know, I really thought I would be more anxious than I am. Things are coming together; even the maddening little things that drive me crazy. By Monday I should have a slew of DIY stuff to post, including my centerpieces, which are coming along better than I had hoped and my display board for my escort cards. Both projects are super easy, super cheap and don’t require a lot of that fine detail work that can be hard when you have a disability. We are also making our own table numbers and the favors but those won’t be done for a bit yet.

Yesterday, I went to do my hair trial, originally my sister was going to do my hair, but my stepmom, a hairstylist, was nervous about it and recommended someone at her salon. I checked with my sister, to make sure she didn’t think it was personal and made the appointment. My Stepmom was probably right; Angela doing my hair probably would have been stressful for both of us.

Sue was actually the one to do my trial, which saved me some money, but her co-worker, Luanne was there to see it. My stepmom assured me that Luanne was way better at up do’s than she was and since my hair always looks amazing with Sue does it, I am confident that my hair is going to look awesome.

I wanted a side ponytail with curls. This is what Sue came up with (keep in mind it was done in half the time it will probably take the day off and I took this picture several hours after having it done):

It’s a stupid picture of me I know, stop laughing. I think it will look really nice. Now that I have seen the hair, the makeup and the dress I can finally really imagine what I am going to look like the day of. I know it’s silly but I really am scared I won’t live up to the expectation of this beautiful, graceful bride; most of which I hate to admit has to do with my disability. When I close my eyes, and think about my wedding day I don’t picture myself with a disability. In my minds eye I walk up that aisle with the grace of a runway modal. I am standing up straight. Tom and I are posing romantically for pictures, and he is twirling me in my dress on the dance floor. But that bride only exists in my head. I know on the real day I will have my crutches, my gait will be stiff, and my knees will bend making me look short and making my dress too long. We will struggle to find poses that don’t look awkward and will barely move during our first dance. And even though people will tell me I am beautiful, I’ll wonder if I am just beautiful or “beautiful in spite of”

After yesterday, I am starting to feel a little more confident. For this one day I think that I am not only going to look beautiful, I am going to feel beautiful too and it won’t be in spite of my CP or because of it; for that one day nobody will see it, not even me. I think I am going to blow Tom straight out of the water. He may even cry. If he does someone better get that on camera because I am going to use it as leverage for the rest of our lives.

Dancing with Myself? Hope Not! :)

Seriously I meant to have only a few days between my posts. Why is time going so fast? I have been quite busy in the last week I have:

□          Purchased the gifts for the Bridesmaids, Groomsmen and our parents

□          Made appointment for my hair and nails (Stephy did half of this one, Thanks love)

□          Made Tom and I appointments to have our hair cut

□          Scheduled a wreath making date

□          Picked songs and met with the DJ

I booked our DJ last year, mainly because I knew that 9.10.11 would be a popular date but also because my family lives for weddings. Not because we like to get dressed up, or because we are suckers for romance, it’s because we love music and we love to dance. To me music is right up there with photos. I did a lot of my DJ research online first and actually only interviewed two. The first worked with a friend of mine and although he seemed nice his prices were high and he was young so I was worried that we would end up listening to a lot of club music. I hate club music. Me and club music don’t jive; I either stand there making small jerky rigid movements with my whole body or people think I am having a seizure. It is not pretty and wearing a wedding dress won’t make it any prettier.

David, the second DJ I met with was older, so I knew he would have a lot of the 60’s music we love, and I had seen him play at my cousin’s wedding, so I knew he was good.  His price is awesome too and there was no restriction on the number of hours he was there. I booked him immediately.

Yesterday was the first time Tom had met him, things went well and we nailed down the details for our big day. Of the songs we would play for all the big dances, Tom and I are dancing to “Can’t Help Falling in Love” by Elvis, my dad and I are dancing to “You’ve got a Friend” by James Taylor and Tom and his Mom are dancing to “Wonderful World” by Louis Armstrong. Tom seemed comfortable with our DJ too, which is a huge plus because he is so picky about people.

Another plus: Tom seems to be coming to terms with whole dancing thing. Ironically, even though he is the more coordinated of the two of us he is the one that is most dreading the dancing. We have been together five years, have attended several weddings and never once has he agreed to dance with me.

I try hard not to take it personally, after all, it is about his stage fright and has nothing to do with me, but I have always equated being asked to dance as the ultimate form of acceptance and despite attending many dances in junior high and high school I was never asked to dance. Not once, not even out of pity.

In college I had my chair, so dancing with me was less intimidating, as long as I stayed in my chair anyway. I didn’t experience my first without the chair slow dance until Junior year when my boyfriend at the time took me to the President’s Ball at my college. Other than my father and my best friend (neither of which count) I have not had a "real" dance since then.

The more I think about it though, I am sort of glad that Tom and I waited (me rather begrudgingly) to have our first dance at our wedding. We have been dating five years and don’t have many firsts left, so it will be nice to share one of those one our wedding day. It will be a nice memory. I just hope Tom can relax enough to enjoy the moment with me instead of counting the seconds until it is over. 

No Wheelchair Allowed? Apparently Some People Still Haven't Heard of the ADA.

This whole wedding experience has been a bit of a surprise for me. I expected to come across a few more challenges as I progressed in planning my wedding. Does that make me cynical? As it turns out though, I have been pleasantly surprised by everyone’s excitement and willingness to help however they can and have had nothing but positive experiences, especially with my dress. I became even more grateful for this when I saw a post made by one of my friends on facebook. She had been shopping for her best friend’s wedding dress when she was told that she could not enter the store because of her wheelchair. The story was picked up quickly by the local television station.



Here is the full story.


I can’t believe it. I mean, first of all you can see from the photo that the front of Kim Kriner's Bridal Boutique  is barrier free, which means that a person in a wheelchair can, in fact, enter the store. But someone has set it up so that the aisles are narrow making it hard for people in wheelchairs to get around. Does this person make an attempt to fix this, since you know, it’s the law? No, he or she puts a sign on the door and has staff tell people in wheelchairs to leave when they try to enter.


The girls entered anyway, only to be told that Stephanie could not enter the dressing room because her wheels might dirty the dresses. The staff that told them this was actually surprised when the girls got angry. See they have a policy about no shoes in the dressing room and wheels and shoes are the same thing, right?


My question is this. What if Stephanie had been the bride?


Clearly this store has never even considered the fact that someone with a disability might need to use their services. Cleary, they had no intentions of even trying to make accommodations for this before today.
All I can say is thank you Stephanie for going in anyway, for making this story public and for not letting this happen to someone else; someone like me, whose biggest fear was being told that she could not try on dresses because of her wheelchair.


And thank you to Mimi's Bridal Boutique and David's Bridal in Ann Arbor for seeing a bride and not a wheelchair, for making me feel comfortable and for helping me find my dress.

Relationship Challenges: Finding Understanding

People who don’t know me and Tom always ask if he has a disability. I guess it is expected in our society to marry someone who is just like you. This is a common assumption, though not just with a disability; but with other things like race, economic standing, and education level. Some of it may have to do with prejudices, but I don’t think that is the full reason. I think that it also has to do with comfort we find in surrounding ourselves with people who have had a similar experience.

I have never known this comfort, at least not in my romantic relationships. Most of the people I have dated have not had a disability. I have only had two boyfriends with disabilities. One of them I “married” and “divorced” several times before the third grade, until we finally broke it of for good when I transferred schools. The other was a boy I met at Indian Trails Camp. We dated for a year, he even went to junior prom with me, but we never kissed, so I hardly think that counts either.

I am not sure why all my boyfriends have been of the AB variety. I don’t think I was ever conscious of the decision not to date guys with disabilities, but I must have made it at least subconsciously because I had plenty of opportunities. Maybe I thought it would be easier. And as I look at my friends with disabilities whose significant others are also disabled, I realize that I was right. It is easier. We don’t have to worry about transportation, or P.A.’s or losing benefits after the wedding.

But I was wrong too.

Dating someone without a disability is hard. I suppose that statement sounds funny to some of you, maybe those of you that aren’t disabled, or even those of you who are.  It’s obvious that a disability can bring a number of challenges to a relationship. Tom would never admit, at least not to me, that dating me has been hard; he would say it’s just different. But he would be lying, at least a little bit.

I know that if Tom did admit that it was hard to date me, it wouldn’t mean that he wanted someone else. Just like my admission that dating an able bodied person is hard, doesn’t mean that I don’t love Tom. I do. I love him more than anything in the world. I know that we were meant for each other. We are different but like puzzles pieces, we are a perfect fit.

But it is hard. It’s hard because no matter how much I explain what it is like to have a disability and no matter how hard he tries to understand, he will never know how much I fight and how much I struggle, just to be independent. Just to do the things that most people find as natural as breathing.

Every day, I am in pain. This pain ranges for mild to the kind of pain that make you grit your teeth to avoid screaming. Sometimes it comes and goes, and sometimes it is constant; but it is there every single day.

I don’t tell you this because I want you to feel bad for me; I don’t want sympathy or pity. It’s just a fact; a fact that I live with every day, and that most people are unaware of.  Tom, like the rest of the people in my life cannot see this pain. He sees me go to work, clean the house, make dinner, play with the dog, take pictures, and go out with friends. He assumes that I do this easily because I don’t complain, because it’s easy for other people, so why not me? After all, I am just like everyone else, aren’t I?

Sometimes it’s really frustrating. Though I am grateful for my abilities, it bothers me that Tom and others in my life sometimes take it for granted. There are days when I am doing something, laundry for example, and I just want to scream: “THIS IS REALLY HARD!”

And that’s not his fault, or anyone else’s. I don’t talk about how hard things are or my pain often, and when I do it’s a simple “my foot hurts.” Tom expresses concern, asks about my braces, says he is sorry, that he’ll finish the chore, or go get the car, he helps me to the couch or into bed and tucks a blanket around me, he offers me a favorite treat or an aspirin, but he can’t truly understand.

I know this lack of understanding affects almost every relationship, at least on some level. After all, we are all different and one person can never really walk in another person's shoes. My secret, sort of selfish wish is that he could be me for a day, or maybe a week. That he could experience what it’s like for me first hand. Then the next time I have a really bad day he could give me a hug and say “I understand. It sucks. Thank you for trying so hard.” But, of course, this can never happen. So it’s hard.

If I want this marriage to work, I have to accept that there are some things about me that he will never understand, just like in any relationship. I have to remember not to get too angry or frustrated. I have to remember to tell him when I am struggling. And I have to remember that he loves me and so he does do his best to understand; when I let him that is. 

To Walk or Not To Walk? Getting Down That Infamous Aisle

“So how are you going to get down The Aisle?” This is the one question that has been asked by nearly everyone that hears about the wedding. Thinking about it, it is sort of a weird question. Definitely not a question most brides hear, but then again it’s not something most brides have to think about either.


And the thing is; I do have options, so the question isn’t that weird. Even though I do have a disability, I am lucky enough to be able to walk with the assistance of a mobility aid and have been known to use a number of different things to get around: crutches, which I use for short distances, a walker which I use for longer distances and a wheelchair, which I used for even longer distances. Now, The Aisle is a pretty short walk, and you might assume that I easily came to the conclusion that I would use my crutches, for this most important of walks. But it was not a decision I came to lightly.


See, I can walk, but that doesn’t make me a fan. Walking is not just a pain in the ass logistically, it's a literal pain. My feet, ankles, knees and hips have all on one occasion or another decided to rebel sending me sprawling and I would prefer, NOT to make that kind of an entrance on my wedding day. Also, I get nervous when I know people are looking at me, which I know seems odd because people are always staring, but that’s different. At weddings people REALLY look at you, and my nerves get to me so bad that I have used a wheelchair during almost every other wedding experience.


But the wheelchair has its own set of complications. I would have to make sure that the aisle is wide enough for me to get down the aisle with someone walking beside me, in many weddings I have been in where I used a chair, the person walking with me had to walk behind me because the width of the aisle was not wide enough


I also didn’t want to be looking up at Tom during the whole ceremony. Or have him have to stoop down to deliver the big smooch. I feel like using my chair would create a barrier during a moment where we are supposed to be very close to one another.


Most of my friends with disabilities assumed off the bat that I would walk, simply because I had the choice. Those that don’t know me well assumed the wheelchair and my closest friends were just curious what my decision would be.


I will say that from the start, I felt a lot of pressure to walk down the aisle as opposed to using my wheelchair, although I cannot remember actually being pressured by any one person. I am not sure where it came from; I just remember having this overwhelming feeling that that is what people expected me to do.


When I was little, in the eighties and early nineties the most important thing in the world was to walk. It was the one thing that my entire life circled around; I was even pulled out of classes regularly to receive physical therapy. There were surgeries, braces, walkers, crutches, canes; every effort put forth was put towards walking. By walking I do not mean “better mobility” but rather just walking. It didn’t matter if I was slow, or if walking was exhausting or even painful, as long as I was upright and putting on foot in front of the other, I was a success.


I never really agreed with this line of logic, and felt no guilt upon getting my first wheelchair in tenth grade. In fact, I was giddy at the freedom it provided me, but there are others in my generation who are still taking those slow agonizing steps and calling it independence. Maybe it is their whispering voices I hear in my mind, maybe it is my parents', or my physical therapist's, or those surgeons' all who wanted nothing more than to see me walk. Or maybe it’s me.


I ultimately came to the decision I will in fact be walking down the aisle. My daddy will be supporting one side and a crutch supporting the other. God willing, I will make it down the aisle without performing any swan dives, however, my wheelchair will be there also, just out of view, incase my brain and body are not on the same page.

Should You Hide Your Scars on Your Wedding Day?

So I know this blog has not had much of the focus that I originally intended, that is, I have not written much around the subject of disability as it relates to the wedding process. I think this is because, being a daily part of my life, my efforts to work around my disability a streamlined, unnoticed and natural.

I realize now, that I am letting too much of my own personal circumstances affect the content of this blog. My original goal was not just to write about my own experience with planning a wedding with a disability, but also to serve as a resource to others.

I forgot about that part.

But, once again my favorite TV show, Say Yes to the Dress, was able to inspire me. This weekend, I was watching re-runs and I happened to see two different episodes where women shopping for dresses had pretty substantial scars that they didn’t want to have showing on there wedding day.

My first reaction was to jump through the screen and shake them. And then I remembered that to some people scars are a big deal, and showing them off on your wedding day is not something many people want to do.

As a person with a disability I have lots of scars, and I think they are a very big deal, to other people. For me, they are just another part of my body, like my freckles, I don't even notice them, even when they are clearly visible, unless someone is kind enough to point them out. One day at work, I had this crazy idea to wear a skirt and co-worker stopped me in the hall and said in a very loud voice: “You have big scars on your legs, doesn’t that bother you?”

No, they don’t. Scars mean that I survived, why should that bother me? But on the day I choose my dress, I found my self asking my mother how much of the large scar on my back showed? It’s a scar I have had nearly all my life, the result of a heart surgery that saved my life when I was just days old. Mom said that much of it was showing and for a moment I remember the voice of my co-worker in the hallway.

Can you see my scar ?
(This is NOT the dress by the way)

Then I remembered that on my wedding day, I won’t be surrounded by insensitive co-workers with a warped sense of beauty and little tact. I will be surrounded by the people that love me, that think my scar is beautiful because it means that I am here and that I am able to get married, and have a family and live. And I bought the dress anyway, because it was the dress and I wasn’t going to compromise on it because of some silly scar.

And I hope that you don't either

However, for those of you who are a little self conscious, this article will show you  how to hide scars with make-up so you don't have to sacrifice style or worry about that one relative who you just know is going to notice no matter how great you look.

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I'm short, but my Wedding Dress Shouldn't Be

I just dodged a bullet, kids, a big fluffy bullet in the shape of a wedding dress that would have ruined everything, at least momentarily. My shoes came in, and or course they were not what the picture made them seem. This is exactly why I hate ordering any type of clothing or show over the internet. They are still adorable, they still work, but they are not flat like we thought. This was a problem because Tuesday, I got my dress pinned for hemming on the assumption that they were, in fact, flat.

We called David’s Bridal, even though Mom was sure that the small lift in the shoe wouldn’t be a problem. One Saturday, we went in and tried the dress on, and that my friends, is when we discovered that the dress was not one inch too short as the shoes might imply, but a full four inches too short. When I sat down, my calves showed. No one knows how this happened. The only thing that I can figure is that when they pinned it on Tuesday I was tired, I was barefoot and I had CP

Luckily, on Saturday, I was no longer tired or barefoot. But I still had CP. My Superhero of a seamstress, Willamena, pinned the dress again, this time so that the hem touched the floor. She had me walk a few steps and stop. The dress was magically, shorter on the left. Mom reminded me to stand up straight and I reminded her that although I knew what they meant my CP didn’t. Willamena pinned the short side again and asked me to take a step. Now, the right side was short. At this point we were laughing and wondering how this could be happening.

Finally, Willamena decided that we needed to hem it long, and in stages, in order to avoid disaster. We all agreed that this was the best plan. I already was starting to feel like the crazy lady on Say Yes to the Dress who shows up to the bridal salon so much that the entire staff knows her and her family by name, and the thought of getting in that dress at least two more times before my wedding day was exhausting; but it was better than having my dress hemmed short.

Luckily, I have 10 whole months before the dress has to be done. I am so glad that picked out a lace up dress. This limits the alterations needed for most people so all you really need as a hem and bustle. I am also glad that I listened to my own instincts about when to get the dress because I severely underestimated the amount of time that the alterations would take. Willamena, is glad I ordered my dress early too, that way she doesn’t have to secretly hate me.

Today's Lesson: Get your dress early to avoid stressful alternations appointments and make sure you have the shoes before you make any changes to the length of the dress.