Sunday, December 9, 2012

Happy Holidays!

I am just taking a moment to wish everyone a happy holidays! Whatever you celebrate, celebrate it well!

Sorry for lack of updates. Tis the season to be madly busy and sleep deprived, alas!

I'll be back in action soon ;)

Monday, November 12, 2012

Power chair misadventures

Being able to zip around on my own is a really nice thing. Unfortunately, I may be just a tad bit drunk on freedom and my lust for adventure is kicking in.

With my new wheels I have been going outside for walks with my son a lot. Usually on the pavement, sometimes on the grass. Today we were exploring and I came across a path that lead into the woods. It looked perfectly navigable so I gave it ago.

Then there before me was a long path that lead to a beautiful field. Yay! Pretty! And a path! So I went for it, and it was mostly fine except I hit a soft spot in the dirt--then I lurch to a stop, my wheels spinning uselessly as they grind a deeper rut in the soft earth. Oh crap.

So there I am, sitting in the middle of a field with my three year old, stuck. Couldn't budge. Luckily, because I'm not a complete idiot, I had my cell phone in my pocket. Called my husband. He knew where I was because he takes our son their to play hide and seek sometimes. He was on his way to work, but came back to help me out.

I'm home now, safe with my kiddo and feeling rather silly.

Needless to say, my Quantum Q6 Edge doesn't quite pass the off-road in the dirt test I put it to today. Woops.

Tuesday, October 30, 2012

Events with MDA and New Wheelchair!

I have had a couple of events since last I updated my blog that I would like to talk about!

I recently attended my first MDA Lock Up as Ms. Wheelchair RI. A Lock Up is basically a fundraiser. The MDA gets local businesses to bring employees over for lunch and they are the "jailbirds". They have to make phone calls to make "bail" where the money is donated to MDA to send children to MDA summer camp and all the other services MDA provides for communities and families with neuromuscular diseases.  I got to talk to many people about my story as a woman with SMA and all that MDA has done to help me and my family throughout the years.

Of course, I also got to speak and spread awareness for the Ms. Wheelchair foundation. You would be surprised (or at least I am surprised) how few people know that the foundation even exists. I love getting out there and just showing people what is possible. I love to promote the organizations that have changed my life.

In short, it was a lot of fun! My husband even called some family members to ask them to donate.

A jailbird at the Lock Up. He came in costume! How cool is that?

Erik and I also wore our stripes, hehe.

I also went to the MDA Halloween Bash held at the Exeter Harley Davidson. It was a family event that was a great time for kids and parents with games, trick or treating, a kids costume contest, pumpkin painting, prizes, burgers....and my favorite part, a potato cannon! Yes, they let me shoot some sort of cannon. You should be afraid! It was a lot of fun.

All the kids in the costume contest.

We did a theme for all of our costumes, because we are awesome/nerdy like that

On November 5th I will be visiting Hasbro Children's hospital to meet and spend some time with the children there. I even made and purchased some autograph cards to hand out! There's something I never thought I would need, heheh. It is pretty exciting! I'm wondering what else I can do to brighten the day of the children there.

In other very exciting news, I have a new wheelchair! It is my first power chair, and thus a huge adjustment. Since two serious falls that really set back my mobility, I had really lost a great deal of my independence in my home. Now, I have at least most of that back and I'm not quite so worried about having another injury. I am also getting a huge kick out of being able to chase my son around now. Mommy is FAST now, and it is really, really awesome.

Unfortunately my walls do not agree. I'm pretty clumsy with this thing! It is taking a lot of getting use to, and my house is getting a few accidental renovations....but I'll sure I'll get the hang of it! It is well worth it for more independence.

My son says I'm "Robot Princess Mommy" Heheheh. Let the reign of Robot Princess Mommy begin!

Monday, October 15, 2012

On pregnancy

Pregnancy has been on my mind a lot lately, and no, I am not having another baby. However, one of my good friends is nearing the end of her pregnancy and having a very hard time with it. She has CP, and now that she's near the end she's having a very difficult time moving around and is in a lot of pain. Thinking about you Jenny! <3

Additionally, there have been questions lately about pregnancy on SMASpace about pregnancy when you have SMA, so I thought I would talk about my experience with pregnancy. Later, I will talk about being a mother with a disability, but that will take MUCH longer! Heheh.

So, lets begin shall we? My pregnancy was planned. My husband had always wanted to be a dad, and we both knew he would be amazing at it. I got the 'baby bug' a bit early, but I knew I wanted to be a mom. I knew also that it would probably be the most difficult thing I had ever attempted. I cannot communicate to you the monumental excitement and anxiety I had in equal amounts. The question on my mind was "How am I going to do this?" which, when you have a disability, is a question you ask yourself an awful lot.

It was uncharted territory for me. At the time, I knew no one else with a disability who had had children. I did look, but there seemed to be very little in the way of information out there for me. So, I asked my doctor. I expected that he would try to talk me out of it, but actually, he told me to go for it. He warned that I might get weaker from the combination of weight gain and hormones, but that there was really no reason I shouldn't be able to have a fairly normal pregnancy.

Thrilled, out next step (besides the obvious fun part) was to get my husband, Greg, tested for the SMA gene. Now that we know so much more about SMA, you can check to see if your partner is a carrier. If he was, we would be faced with a difficult decision, because there would be a good chance any child we had would also have SMA--luckily, Greg did not test positive for the gene and so we were able to proceed. Of course, my son is certainly a carrier, but growing up, he will know it. Maybe, hopefully, by the time my son wants to start a family there will be a treatment.

So the journey began. About three months after I stopped using birth control, I got pregnant. We were thrilled. Everything was looking great until I went in for my 12 week appointment and the doctor could not find a heartbeat. He sent me in for an ultrasound and it was discovered that I had a missed miscarriage--which means the pregnancy was no longer viable. Devistated, I had to go and have a D&C at the hospital.

After my miscarriage, I was crestfallen. I worried it wasn't meant to be.

Another three months later, we went on a camping trip with our friends on our anniversary, and it was then we conceived our son. The unrestrained joy wasn't there--we were more cautious now. The first trimester was the most difficult for me. Not only was I always worried I would miscarry, but hormones have always had a tremendous effect on me. I was tired so much of the time I feel like all I did for those first 12 weeks was sleep and eat. And that was really accurate! Moving around was do difficult just because my muscles felt so weak and tired all the time. It was the way I feel when I have PMS, but it didn't go away!

Second tri brought relief and a return to normalcy, as it does for many women. Finally, my baby bump appeared and I felt pregnant instead of just fat! And while I was gaining weight, most of my strength returned and I felt more like myself. I only had to take one nap a day, haha. It was during that time that something really began to change in me. As you know if you read my other entries, I struggled with body image for a long time. My body was always something that could never seem to do what I wanted it to be able to do. But watching my stomach grow hard and round with my son, watching my body nurture a whole other life? I began to love my body. It was an amazing thing. I even liked to look at it! I loved the firmness of my bump. I was one of those pregnant women who was always touching their bellies.

Third trimester came and I was tested for gestational diabetes. Knowing I had a family history of it, I was unsurprised that I had it. I was pretty upset! No more huge bowls of mashed potatoes and gravy for me....but, I was able to manage it with diet.  AND, I only gained 20lbs for my entire pregnancy, which is just awesome. I was huge though. All in the belly. My son was almost 9lbs when he was born!


I only suffered one fall during my pregnancy, and that was bad enough! I fell in the bathroom, and while I didn't hurt myself falling, I hurt myself getting up. My husband usually lifts me around the middle, but as I was almost 38 weeks pregnant at the time, that was a lot more difficult! Ended up bruising some ribs, but the baby and I were alright. We were lucky.

Now, my OB was excellent and extremely encouraging and supportive. He didn't think I would need a c-section, but we would be prepared for one just in case. I worried, and worried, and worried, wondering if my body could handle the rigors of labor. What if I didn't have the strength to push?

In the end, I did. I had a natural, vaginal birth and it was amazing. I felt one with the universe. The worst part is when you can't push. Once the doctor gives you the okay to start pushing, your body and your mind become indestinguishable. The whole essence of my being was focused on birthing. After a 14 hour labor and no sleep, I was exhausted. I was so tired I was drifting to sleep between pushes! I was pushing for an hour, son was born.

I had never, ever been so exhausted or so proud of myself. It was the beginning of a new appreciation of my body, and my life.

There we are, the family! 

There's my little boy, awake and peaceful on mommy. His eyes were open right away.

So, if you have any questions, leave them in the comments and I'd be happy to answer! 

Saturday, September 29, 2012


Hey all,  sorry I haven't updated lately! I have been so tired. I don't know if it is the time of the year or what, but my brain seems to turn to pudding more often than not!

Anyway, an exciting development; I got professional pictures done as Ms. Wheelchair RI. So exciting! They were taken by the amazingly talented and kind Laurie Brandt in her studio in Coventry. I had my hair and make up done by Brittany Briere, enjoying the chance to feel like a model!

It was a wonderful experience and I really love the photos! If you want a sneak preview, check my Facebook page!

Monday, September 17, 2012

Adventures at King Richard's Faire

So, if you have not noticed already, I am a bit of a geek. Okay, more than a bit. I am considerably geeky.

One of my many geeky pastimes is Renaissance Faires. Every year we attend King Richard's Faire in Carver, MA at least once. The faire is open ever autumn and is always an excellent time where you can dress up with your friends, eat giant turkey legs, watch men joust and sing tavern songs among many other things. Oh, and shop! Did I mention shopping? Because seriously, the shopping is amazing. So many wonderful things.

There I go again, getting derailed by shopping.

Anyway! This was an especially exciting year. We got to attend the faire with a large contingency of our dear friends, which automatically made the day far more awesome. Even cooler, I got to go with my friend Melly from Colorado who flew in to spend the weekend with us. We had not seen her since I was pregnant! We had some quality bonding time at the Ren Faire, as she is also a Renny, as they say. Big time. She worked the circuit for a while.

As if that wasn't enough? There are special events on Saturday's, and this one was the Cleavage Contest. Yes, you heard me. Cleavage contest. Melly, my friend Jenny and I were all excited to wear our corsets and enter, just for the fun of the experience. Our men were excited because--well, you know why.

That's why

I probably do not need to say that I was the only woman in a wheelchair on that stage, strutting my stuff and what not. Indeed, the had to somewhat modify the competition for me. They most certainly didn't expect me, but the workers at the Faire are excellent people. It was so strange being up there in front of, no lie, hundreds of people. I didn't feel any fear. No nerves. Which seems very strange to me now. The competition was intimidating! Beautiful women with the kind of moves and bodies I'd always wished for.

It went like so. Three judges were chosen from the audience. The judges got to pick their two favorite contestants, then the hosts of the contest chose wild cards to move to the next round. The next round, the audience cheered loudly for their favorite. The energy was incredible. The response from the audience was amazing.

After narrowing the contestants down again, there was a trampoline jumping portion. You can see why this would be a problem for me, I am sure! So they asked my husband to come up and just shake my chair around instead--which he did, with alarming vigor. I thought he was going to break it. Or me. Or both.

Narrowed down again, now down to three--and I was among them. It was time to go out into the crowd and collect money from the audience. Half the money collected by each of us would go to a charity that helps employees of the Renaissance Faire during financial crisis. The rest? We got to keep.

Since I could not go out among the crowd, I had one of the hosts doing so for me, but even with her there people were coming up to the stage to give me money because they couldn't reach her. It was so overwhelming and so much fun.

They counted the money. I collected 245 dollars. Most of it in small bills.

I won. I won half that money, two tickets to the faire, and a new corset (extremely exciting I assure you!)

My new corset!

While I sat up there, looking out over the audience, I couldn't help but notice the other people with disabilities. There was a girl in a power chair there, and all I could think was that I hoped she saw me and felt empowered. We can be beautiful. We can be SEXY. We can totally win cleavage contests, apparently!

I know I helped a lot of people look at people with disabilities differently that day. That was the best prize.

The smile on my husband's face comes in a close second.

Tuesday, September 4, 2012

MDA Show of Strength

This Labor day Weekend was the MDA telethon. They are calling it the Show of Strength now. I won't get into any of the politics surrounding the history of the event.

Suffice to say, MDA has supported me and my family a lot over the years and I was happy to appear on the Show of Strength to talk about Ms. Wheelchair America, what it was like to have the national pageant in RI, and a bit about my platform. I hope that whoever wanted to see it got to, and I hope I'll be getting requests to speak and appear at more events soon! :D

I also got my crown! It is stunning. So excited. I could not stop grinning.

Kristin Conners, myself, and Doreen Scandlon from ABC6

Sometime this week I should be meeting up to plan out my year as Ms. Wheelchair RI. Very excited! I hope that I will be able see my dreams come to fruition.

Friday, August 31, 2012

Nationals, Crowning

The big moment. The one we'd all been waiting for.

Morning came and breakfast was almost leisurely considering the pace we'd been keeping so far that week. It was relaxing. A good chance to talk to each other and speak encouraging words. I think every one of us wanted to win it.

After lunch, we headed to rehearsal for Crowning. Learned our positions. Did a quick run-down, then we were off to procure our own lunches then get our hair and make-up done in anticipation of the 4 o'clock event.

I went back to my room for a little while before my appointment for hair and actually took a nap. By that point in the week I needed it direly. Once up, I ordered room service but didn't have time to eat it! Wheeled on up to have my hair done and ended up eating my lunch outside the room where everyone was getting prettied up.

Everyone looked gorgeous. This is probably one of the most fun parts of the whole experience. The part where we get to feel like beauty queens.

Hair done, I went back to my room and pulled my gown from the closet and put it on, hoping it would still fit. After all the salads we ate, it had better!

 Did my make up, put on my jewelry in the beautiful vanity of the marble bathroom: I imagine it is the parallel of the 'arming of the hero', all of us putting on our glistening armor.

Down to the ballroom we went, where we were subsequently packed into a back hallway that was as cold as a refrigerator for half an hour. We were FREEZING. We hugged ourselves, teeth chattering beneath the blasting AC, complaining as we waited. Eventually, we finally got out there. Rather than be nervous, I think we were mostly relieved to get warm again.

Alabama was first. I wasn't until near the end this time.

"Good evening, my name is Katrina Horsch and I'm Ms. Wheelchair Rhode Island 2012." Queue applause and my manic smile.

I get into position and look out over the crowd. I can't see my family. Sadly, the are all the way at the back. I hear Erik before I see him. He's yelling, "WANT TO TAKE THAT DRESS OFF MOMMY!" Insert my mental facepalm.

Kristin and Kelly Connors acted as bards for us with a beautiful duet that I daresay melted the mascara of every contestant. I was extremely glad I had my purse on the back of my chair and had tissues. I tried to minimize the damage. A fruitless task.

So much of the evening is a blur. The top five were named and I was not among them. I was disappointed for me and for the rest who didn't make it, but excited for those who did. Conflicting feelings you would think, but not really. Everyone was excellent. Its such a beautiful moment I wish everyone there could have had it.

The awards were passed out, the runners up declared.....and then we crowned ourselves a new winner! Mariah of Texas, as you well know. A girl with a smile that could melt glaciers.

I will be honest with you. When it was over, I cried. I was overwhelmed. Once more, I went back to my room to try to fix the damage. Red-eyed, I returned to celebrate and had the opportunity to meet the current Miss Rhode Island, Kelsey Fournier. She was such a sweetheart.

I also had the opportunity to meet and have my picture taken with. Representative Jim Langevin. Unfortunately, no pictures yet. Will post them once I have them!

And now, a bunch of photos!

Let me see here. Ms. DC, Ms. Utah, Me, Ms. Oklahoma and Ms. Arizona

Ms. Florida, Alabama and Illinois 

Ms. Utah and Ms. New York

North Carolina, Colorado, me, Florida

Ms. Colorado and I

Ms. Iowa and Ms. Kansas

Ms. Tennessee 

And here is me at the end of the night, looking exhausted from the week!

What a wild ride. 

Love to all my sisters!

Tuesday, August 28, 2012

Nationals, Speech night

Friday was the much anticipated Speech Night. For everyone not competing, it is the favorite night. For those of us who are contestants, well, we're a little nervous! This is when we stand up in front of hundreds of people and deliver our speech. It is our main chance to really get our message out there.

I was excited and nervous...but more excited. I felt pretty good about my speech. This is where I shine. I'd practiced my speech a hundred times. Meticulously timed it over and over. I was ready. As ready as I'd ever be.

We went in reverse order, so I was near the beginning. I would have preferred being closer to the end so I could hear the majority of speeches, but oh well.

I got up there and did my thing. I messed up slightly near the beginning, but apparently no one noticed except me. I recovered. I got through it.

No. Do away with false modesty.

I rocked that thing! The applause vibrated in my soul.

Everyone did really amazing. It was so great to hear everyone tell their stories and talk about their platforms and their passions. I've said it a thousand times already, but what an extraordinary group of women.

After speeches and dinner were complete, there was almost an audible exhalation. We all let go of the pressure we'd been carrying every since we entered the hotel. Judging was over. There was nothing to do now but live in the moment and enjoy it for the amazing, beautiful opportunity it was. Our laughter was carefree, boisterous and unashamed. Many of us went up to Temple to have a drink and some dessert. I had a lovely time with Ms. California and her companions. We ate oysters, drank, then had a little dessert. We talked, we laughed. I don't even remember what we talked about--but I remember the feeling; the giddy anticipation of the culminating moments to come; the knowledge that we'd never be the same.

It is a strange feeling to be in the moment, knowing that moment will change you forever. Embracing that moment is indescribable.

I didn't take many pictures that night, oddly. But here is my husband, me, and Courtney, Ms. Wheelchair Maryland.

You all know what comes next!

Friday, August 24, 2012

Nationals, Pajama Party!

Thursday night was the much anticipated Pajama party. I was SUPER excited about this event. I didn't know full on the lovely things they had in store for us, but I DID know the Stacy from YBF cosmetics was going to be there.  As someone admittedly obsessed with make-up, skincare, beauty, etc. I was ecstatic.

This was a girls only event if possible (obviously some people had male companions they needed there) so I had my mom come to be my companion and left the boys to hang out in the hotel room and do boy things; namely eat pizza and watch movies. It was excited to have my mom come so she could meet all the friends I had made, not to mention getting to hang out with my mom. We're very close.

Right, so we had dinner--BEEF! WE HAD SOME BEEF! AND ICE CREAM!--while Stacy did a presentation about YBF and self-esteem. RIGHT up my ally. It fit in so well with my platform. It was an excellent presentation. Stacy has such an amazing energy that it totally contagious.

Really, the energy that night was off the wall. When you think about it, there were more than 28 women in wheelchairs, most around the same age, allowed to let loose and party. When would we ever have the chance to all be in each other's company again? When would we have have this amazing opportunity to bond with other women with disabilities? Probably never, that's when. Every single woman in that room was determined to life the night to the fullest.

So, after the presentation, they had several awesomely fun stations we could go to do to traditional pj party things. They had some stylists come in from a local salon to do hair and nails. They had a fun photobooth with various props for silly pictures. Stacy was also there doing eyebrows!

First I did my nails. Yay! I needed a polish change pretty bad by then.

Then, I got in line for meeting Stacy and having her do my brows! I was SO excited to meet her. Told her I was a bit of an amateur makeup artist and she was like :O !! 

See? :O 

;.; Cry! It's blurry!

After that, right on over to having my hair done. The girl put my hair in this beautiful braid. LOVED it.

Pretty, right?

So, unfortunately, by the time I had done all that the photobooth guy was having issues with his camera that I don't think were resolved that night. That didn't stop me from being a goofball however. Iphone+props, GO!

Purple boa and tiara. Always classy.

Yup, that's my momma! <3 

At this point, it was time to DANCE. I heard the beginning of "Born this Way" by Lady Gaga and was wheeling to the dance floor as quickly as a could, making grabby hands for the microphone. That's my jam!

For four minutes and twenty seconds, I was a rock star. 

From outside the room I saw husband with Erik. He wanted to say goodnight to me. But when he saw that we were all dancing? He could not resist the lure of getting funky!

Dance my child! Dance!

Ms. Virginia and Ms. North Carolina

I look maniacal 

Myself and Ms. Oklahoma! She's a great dancer

I also took a video. Please excuse my extremely shaky camerawork! I was dancing.

Ms. North Carolina and Ms. New York making me LOL with their amazing moves.

All of us together!

And that's it. As you can see, we had the time of our lives!

Be Fierce, forever!

Wednesday, August 22, 2012

Judging and Workshops Part 2

Let me take a moment to mention some of the other amazing workshops all us contestants had the privilege of taking part in.

There was a wonderful workshop about the ADA and other laws that concern Americans with disabilities. I learned SO much in this workshop about just what ADA code is and how incredibly specific it is. Places I thought were accessible according to ADA are not. Places I thought never could be accessible, should be. There is a common saying around here about historical buildings; "grandfather'd in". It is the idea that if a building was built before ADA went into effect it is not required to comply with the law. It is the idea that historical places do not need to me accessible to people with disabilities simply because they are historic.

I learned that this is very simply NOT true. There are different rules for historical buildings, but they CAN and SHOULD be made accessible.

I cannot tell you (thought I suppose I am telling you) how much this blew my mind. Sitting in that room I could list so many places I could never get to and had no hopes of changing. I thought I couldn't make a difference. But now that I know the law and people who are good at enforcing that law? Well, I have a lot of letters to write.

Another workshop that stands out in my mind was the 'you can lead, but can you follow?' workshop. It was taught by a ballroom dancer, and she carried the metaphor of dance and leadership through the workshop. It was interesting, because it is our job to be leaders in our communities. But we also need to know how to be good followers. It is an important skill to learn. Every relationship is give and take. Sometimes you lead; sometimes you support the other person leading. The dace metaphor was an apt one.

I may have also learned a few moves of the marenge. One, two, three, four!

Sorry I don't have many photos. Was too busy to take pictures!

Let's talk about judging.

I'll start by saying I guess I could have done a lot better. I had prepared myself too. Looking back, there are some questions I would have answered differently. There are things I would have elaborated on. But really? I did the best I could do with what I was given. You go into that room and there are five judges behind a table, and all you can do is be yourself. That's what I did. Myself is a little weird. Myself is passionate and dedicated. Myself is a nerd and a mom and a lover of fashion and make up and tea. Came down to it, I was not the best candidate to be Ms. Wheelchair America.

The competition was incredible. Every single woman there was amazing. Seriously amazing. I felt like I had done so little compared to their amazing credentials. At first I was intimidated, but as time went on we all bonded SO incredibly well. We were super supportive of each other. Indeed, I do not envy the judges on the decision they had to make. It must have been close. But Mariah? She's going to be amazing. We're all here to support her.

I mean, look at that smile! She's just about the nicest girl on the planet.

Next up, Pajama party! Look forward to lots of pictures and even a video! Bwahahahahahaa!


Monday, August 20, 2012

Nationals, Interview days and Workshops Part 1

Wednesday began the Leadership Institute and judging sessions. While they say you are 'on' as soon as you walk in the door, this was when we met the judging and things began to really wind up. This was when nerves started running high.

From 9am to 4:30 we had workshops, with only a couple fifteen minute breaks (basically enough to roll to the restroom and pee) and one break for lunch. On top of that, we were all scheduled to be pulled out of workshop at certain times for our judging sessions.

I wasn't sure what to expect from the workshops, but WOW, they were really fantastic. I believe my first workshop was on social media and how to best use it to your and your cause's benefit. I had already been planning to start this blog before then, but this workshop really cemented my desire. It also taught me how to make a FB fan page and use that to promote the MWA/MWRI program and myself during my reign. Reign. That feels so incredibly strange to type. Perhaps I should try to pose like Elizabeth I when I'm wearing my crown.

Right! Back on topic.

Another workshop that was very memorable was Disability Heritage. This one had a big impact on me. Like many people with disabilities, I grew up in an able-bodied world.

As I child there was no one else in my family with a disability. I have Spinal Muscular Atrophy you see, and it is like losing the genetic lottery. It is a recessive gene that is carried by many people, and unless there has been someone they are aware of who has had SMA in their family, most people don't know they are even carriers. My parents? They had no clue. But that is a story I'll tell another time.

The concept of Disability Heritage--of disability PRIDE was completely foreign to me for a long time. As I have said many times to many people, disability was not something that you talked about when I was younger. I tried to ignore it, which was ultimately a waste of my time. No one else was going to ignore it. Why should I? Having a disability can be profoundly isolating. I can't count the times that I felt alone in my experiences. If you told twelve year old me, awkward with disability AND puberty that someday I would be proud to be disabled I probably would have choked on my kool-aid.

Things change. As you get older you begin to appreciate your experiences. I began to see how my struggles had made me a stronger, more empathetic person. I began to describe my struggles with pride and with humor. Now I'm PROUD of the stories I have to tell and the experiences I can share.

So seeing the history of other people who had paved the way for people with disabilities to have that freedom, to see how far we have come, was really (and this word is over-used but I can't think of a better one) empowering.

We are not just broken human beings. We are a people. We have a history, a culture. We have pride.

I left that room feeling...connected.

This was one of the images in the Disability Heritage workshop. This is a photo of members of an organization called ADAPT. People threw themselves out of their wheelchairs and began crawling up the steps, a very visible protest and call for accessibility. I admire the heck out of these folks.

Wednesday, August 15, 2012

Nationals, Day 2. Mentoring and Fun Day

Tuesday. Fun Day. Traditionally this is the day where we all wear our official Ms. Wheelchair America 2013 T-shirts. That alone is fun! They were pink this year. I wholeheartedly approve.

To start us off right, we had out mentoring event. We were all broken down into mentoring groups with several contestants and a couple of youths with and without disabilities. The purpose of this event was to embrace ourselves as positive role-models for young people and show them that people with disabilities could be accomplished, confident people who do not let their disabilities stop them from pursuing their dreams.

We all sat around a table, wondering what activities we would be doing. I was thrilled when they announced we would be making a character together that we would then present to everyone. Character building!? That is so my thing! I love exercises like this.

We had a young lady who used a wheelchair and an able-bodied young man who works with a local acting troop. I still had my son Erik at this point, and so he was a part of things as well. In fact, the next table over was a little girl Erik got to play with. She was extremely adorable with her pink wheelchair. Girl has good taste.

Behold the cute!

So we made our character, a mermaid named Mareena who had a PhD in Terrain Biology (Hahaha that was my husband's idea) and had ADD. She had a best merman friend named Marcellus who liked to sing. We filled out some pretty standard questions about our character, presented it to the group, then sung a rousing round of Under the Sea.

I think the most amazing part of this for me was seeing my son interact with the little girl and all the women who used wheelchairs. Obviously, he is use to me. He rides around on my foot petals, rides on my lap, pushes my chair, etc. But it never really hit me until that moment that to my three year old son, all these women were completely normal. He will grow up knowing that mobility impairments are just the reality. Nothing to stare at or make fun of. He will accept and embrace it, simply because he has been exposed to it. This is an experience most children didn't have when I was a child. You didn't talk about difference.

We need to talk about it. We need exposure to gain acceptance.

After the mentoring event we had a short break before we all got ready and went out to temporarily take over the streets of Providence.

You should have seen us, more than twenty eight women in wheelchairs in pink shirts and white sashes rolling down toward the park in front of Providence Place Mall, stopping traffic and looking fabulous doing it.

And so, we gathered in front of the State House for our group photo.

Let me tell you, fitting 28 women in wheelchairs into one photo is like life size Tetris

After that, we went down to Fire and Ice for lunch. It was pretty chaotic, but I got the chance to talk more with the amazing ladies I met that week. 

And for dinner? A New England clam bake. We ate all the clams. The other folks at our table were not into them, so Greg and I said pass 'em over! Delicious clams dipped in butter? How is that not delicious? Maybe it takes a New Englander to appreciate...

And that was day 2.  

Be Fierce!

Tuesday, August 14, 2012

Nationals, Day 1

Nationals. The week that was sure to change my life. Everyone said so. If nothing else, I was determined to let this experience do just that.

I was incredibly nervous. What if the ladies didn't like me? What was this week going to be like? So much was a surprise until I walked in the door. I was one of the first contestants to arrive since I was the host state. I wanted to be there to welcome everyone. Of course, the many people who ran this event were there overseeing everything, and they all made me feel welcome and comfortable.

The day was a whirlwind as we all came together, registered, got settled into our rooms, had photos taken. I felt like such a celebrity.  I'm sure we all did.  Orientation came and went. We got our schedules. It was time to throw ourselves into the amazing, empowering tempest that was the MWA 2013 pageant.

And from the moment I met these strong, beautiful women, I knew I wasn't going in alone.

Me, Ms. Wheelchair America 2012 Josie Badger, and Ms. Wheelchair Massachusetts Patti Panzarino

 Me with Ms. Wheelchair Texas, who would become Ms. Wheelchair America 2013! Look at her, she has no idea what is in store!

My son Erik and I at the Renaissance Downtown Hotel in Providence, RI

Be Fierce!

Monday, August 13, 2012

Welcome to my blog! I am so excited to be representing the Ms. Wheelchair Rhode Island Foundation, Ms. Wheelchair America, and my beautiful state of RI! I've just returned from the national Ms. Wheelchair America 2013 Pageant and Leadership Institute and I have so many exciting and moving stories to tell.

But let us start from the beginning, shall we?

I first got involved in my state pageant in April of this year. Since then, it has been a whirlwind. I received an email from my local chapter of the Muscular Dystrophy Association (who I have been a client of for many years) reaching out to the community to see if anyone would like to participate in the Ms. Wheelchair Rhode Island pageant.

Well, there were some words I had never seen juxtaposed before. Wheelchair + Pageant.  I had no idea such a thing existed. Filled with excitement, I contacted the woman who was organizing the pageant this year, Stephanie Clang. She quickly became my mentor.  It was about two weeks until the pageant, so I thought maybe I was too late to enter. To my surprise and pleasure, it was not. I got everything together in a mad rush of excitement and nerves.

I filled out my application. I prepared a two minute long speech. I had to be ready for two, ten minute judging sessions and be prepared for on stage questions. Quickly, I learned that this was not your average beauty pageant. In fact, it wasn't really a beauty pageant at all. This was all about advocacy and achievement for women with disabilities and was open to any woman who used a wheelchair for 100% daily community activity from ages 21-60, married, single, divorced...Did not matter. It is about addressing the issues of people with disabilities and making a difference in our communities. It is about being a positive role-model.

Like any pageant however, we needed to come up with what they call a "platform". This is the issue that you will dedicate yourself to. Something you feel passionate about. To invoke a metaphor, it is the legs (wheels!) that you will stand on if you are chosen.

I thought of a few issues. I'm passionate about a great many things. I kept returning however, to self-esteem and body image.

It has been one of the most difficult struggles of my life and I knew I could not be alone in that. As a woman with a disability I have really struggled to not only accept my body, but appreciate it in a world that promotes a very narrow standard of beauty.  I grew up never thinking I could be seen as beautiful. I walked with a waddle. I used a wheelchair. I could not dance like the pop stars in the music videos. I felt my every movement was awkward and unattractive. I had no one like myself to look up to. No beautiful, successful, confident women who just so happened to have a disability.

And that is unacceptable.

I knew my platform. It couldn't have been anything else. Not for me.

So here I am. I hope the world is ready to hear a lot from me. I'm loud, I'm passionate, and I'm not going away any time soon.

Be Fierce