Category Archives: Disability

The UNlimited College Experience

On Monday I went with my in-laws to drop my sister-in-law off at college. I was so excited that you would have thought I was the one starting on a new adventure. My sister-in-law has chosen to attend my alma mater, Grand Valley State University, and I can’t help but feel like her experiences there are partially my responsibility. I know that’s silly, but I just want her to have a great experience.

I loved college; it was easily four of the best years of my life, part of that is probably because high school was pretty terrible for me. I was the first person in my immediate family to attend a four year university. Having a disability seemed to make this accomplishment even more important, although I didn’t particularly think so. College was always something I knew I would do, but there were still some challenges that needed to be overcome. If you have a disability, and plan to attend college, there are a few things to keep in mind.

Every college has an office that is supposed to tend to the needs of students with disabilities. My advice is to contact these offices before you are admitted. That’s right, research the services that are provided for students with disabilities and make that research part of your decision to attend. Accessibility should not be the only reason you attend a college, but it should probably outweigh the male to female student ratio, or the food selections.

My second piece of advice is to visit the campus, more than once, before accepting admittance. Especially if you have a disability that will affect how you navigate the campus. Because I had visited Grand Valley several times before becoming a student, I knew I would need a power chair in order to be fully independent. I never considered a power chair before, at this point I had only been using a manual chair for a few years; this was not something I would have thought of had I not thoroughly toured the campus. When you visit campuses you might discover that you will want an aid, a service dog, or another accommodation to help you navigate. You may also discover that the campus is not as accessible as you had been led to believe.

My last piece of advice, do not be afraid to speak up and ask for the things you need. In my first year at GVSU, I found out that there were many small things that made it difficult for me; doors that had no buttons, counters that were too high, restroom stalls that were too small. I wrote a letter to a school newspaper called The Rant. Days after it was published, I was contacted by the dean who wanted to tour the school with me; I was able to point out the things that were not accessible and explain why they needed to be adjusted (which is not always obvious to those who don’t have disabilities). Not only were these things improved, my advice was used for future projects.

College can be a great experience. It can also be a not so great experience. Sometimes situations will be out of your control; but embrace the things you can control to make it the best experience possible. College isn’t just about getting a degree. It is also where you learn about yourself, your needs, your strengths, your weaknesses and really grow into yourself.

Throwback Thursday: A Toy from My Childhood

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Photo Credit: www.lovethatmax.com

Recently, my husband and I went to visit some friends in Grand Rapids who were celebrating their 10 year wedding anniversary. If that doesn’t make you feel old, nothing will. We left our dog at home, but several of the other guests brought theirs. They were all varying degrees of small, but the smallest was my friend’s Yorkie; who tried in vain to keep up with the other dogs as they raced around the yard. I couldn’t help but smile and feel sorta bad for the little guy. He reminded me so much of myself as a child; always struggling to keep up, but no matter how hard I tried, I was always just a fraction too late.

In other posts, I have credited my sister with inadvertently teaching me how to be independent. It was, after all, my struggle to keep up with her that inspired my parents and I to make adaptations where necessary and come up with new ways for me to do otherwise simple things. I have already told the story of the bicycle, but watching that Yorkie running feverishly about the yard reminded me of the scooter at my Grandma’s house. As it turns out, not only could I use this scooter, but was actually so good at that I had others struggled to keep up with me for a change.

Let’s face it, toys such as tricycles, bicycles, scooters, and rollerblades are not geared towards kids with disabilities. And yet, kids with disabilities want nothing more than to go zooming around with their friends. The Roller Racer is one of the few toys I could use without special adaptations as a child (aside from the Power Wheels my cousins had, which I used to run over my sister).

This scooter was great because you used it while sitting down. There was a wide base and you were super low to the ground, this made it really easy to get on and off of independently. The best part for me was that it could be operated with one or both of my arms. I remember the first time I got on it, thinking that Mom or Dad would have to push me around like everything else; I was overjoyed when I realized I could do it myself.

The Roller Racer was my first taste of real independence. Walking at that age was still hard and slow going, and I didn’t have a wheelchair. But with this scooter I felt like I was unstoppable! These, of course, were the days when the end of the street felt like miles. Obviously this scooter is not the answer for truly independent mobility, but it you have a kid that wants nothing more than to zip around the neighborhood with friends, then you really should give with a try. I’m not the only one that thinks so. It has made it onto several lists of toys for kids with disabilities.

Heck, I turned out to be a small adult; part of me wants to order one for myself just to recapture that joy.

Finally, A Recliner I Won’t Get Stuck In!

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This weekend I received a gift from my grandmother, who is in her nineties and is my last living grandparent. She has always been a fun, feisty women and I believe I get a lot of my best traits from her; including my stubbornness. Of course, there are people who might consider that to be a negative trait; however, I find it is one that comes in handy when living life with a disability.

About a week ago my Dad called me and asked if I wanted my Grandmother’s recliner. At first I freaked out thinking she had passed away. But then my dad explained that she was moving to a new place where she could receive more daily help, and that she couldn’t take everything with her. Apparently Grandma had specifically requested that I receive her chair. Not being one to say no to my Grandma under any circumstances, I agreed to take it.

When I sit on a couch I often don’t get the core support I need, so I end up slouching and getting an achy back. This is why I love sitting in a recliner; however, they present their own set of issues. Like most people, when I sit in a recliner, I like to put my feet up and, you know, recline. This wouldn’t be a problem except I either need to be content sitting for a long period of time, or someone needs to rescue me because it is next to impossible to get out unassisted.

My Grandma’s recliner solves this problem, which is why she insisted I receive it. Instead of a lever or manual button release, this recliner has a powered button that reclines the chair and then brings back to sitting on its own. I set it up right by the lamp so I can do my reading and quilting in that chair. At first, I was worried the cats might get under it and get squashed, but they seem to know to stay out of there.

Of course, not everyone has a Grandmother that gives you awesome furniture. Fear not, you can buy one. As a person that typically gets her furniture from thrift shops and relatives, I know the price of new furniture is a bit overwhelming. But if your relaxing needs are similar to my own, a chair like this will be any worthy investment.

The Mother of Invention

This weekend I got to spend some time with my twin. I have not seen her in quite a while because she lives in another state and has a large family, which makes it hard to travel. The distance sucks, but we talk a lot, and even when we don’t there is a bond that no one can touch. I think it would be awesome if every disabled person in the world had a twin. Unfortunately that is not something we can market on the UNlimiters’ website.

My twin has been an invaluable part of my UNlimited life. When we were young she was my constant companion and I would work hard trying to keep up with her. In turn, she would adapt her play for me or help me do something. We were always conniving, her and I. I remember when we had a bunk bed as kids. We both really wanted me on the top bunk, so she pushed and I pulled and somehow we got me to the top bunk. We were thrilled; but then, of course, we couldn’t get down from the top bunk.Then there was the time she tied my trike to her bike and tried to tow me along behind her. It worked for about 5 seconds before I tipped over and was almost hit by a car.

She wasn’t always nice, though. We may have been twins but we were still sisters, and sisters can be mean sometimes. She didn’t always enjoy having me tag along. Sometimes our parents forced her to take me with her in the wagon or my stroller; on these occasions she would take me far enough that I was out of sight and earshot of the house, then leave me stranded while she went to play. She also liked to make me pee my pants when she was feeling extra mean.

These days, she has given up on most of her mean tricks. She is still my best partner when it comes to adaptability, though; she is always helping me come up with new ideas. Even though she doesn’t have CP, my sister seems to understand the way my body works in a way that other people don’t. This makes her a good person to brainstorm with. For example, this last weekend we were at a party at our other sister’s house. A bunch of us were sitting on a blanket playing with my baby niece; but I had to lie down on the blanket because I cannot sit up independently on the ground.

I could have easily sat in a chair, but I wanted to feel included. As I was holding myself up, my twin thought that the wrap she uses to hold her baby hands free could be tied around me in a way that would support my back and allow me to sit up independently. There was a lot of giggling, my oldest niece and my mother thought we had gone crazy, but after some thinking and a few strategically placed knots we came up with this:

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It worked, but after fifteen minutes my neck started to hurt, so the design needs some tweaking. Of course, after we posted the picture of Facebook, my ever practical college roommate suggested that this stadium chair might be an easier solution. I will have to try it; if it works I might be a little sad. My twin and I were sure that we had struck gold with this particular idea.

An UNlimited Year in Review

This post marks my one year anniversary as a blogger for UNlimiters. I can hardly believe that it has been a year, and what a year it has been. I went from being unemployed, to working three part time jobs; from having Hepatitis C to being cured of the disease, and from writing once a month, to writing at least once a week. A lot has changed for me over this year, but many things have stayed the same, including the things I use every day in order to live my life Unlimited. For my anniversary post, I would like to revisit these items, and to share with you the top three I never want to be without.

My very first post highlighted an item that I used most often in my house, the crockpot. Growing up I don’t remember my Mom using the crockpot for anything other than baked beans. The other recipes I had eaten out of a crockpot left much to be desired; so at first I didn’t think I would like cooking with a crockpot. However, I was presently surprised. Crockpots are great for more than just beans, sauces and soups. You can make many delicious items in the crockpot, including desserts. It is a life saver during a busy work week or when I would rather spend time sewing than worrying about what is for dinner.

My second post featured an item I literally could not live without. I mean, I guess I probably could, but it would not be a very full or exciting life. The Hurri-Cane Crutch was introduced to me by a friend of my fathers who happened to know a guy that was trying to market a new kind of Lofstrand Crutch. I have used Lofstrand Crutches since I was about 6. Ever since I was introduced to the Hurri-Cane Crutch, I have never used another, and have tried quite a variety of mobility aids in my time. These crutches are light, stylish and practically indestructible.

Finally, this post featured an item that I had seen a hundred times while being around others with disabilities. Although the reacher was a familiar adaptive tool to me, it was not something I felt I needed. I grew up in an “adapt or fail” type of household. I was taught to adapt to my environment instead of expecting it to change to accommodate me. Thus, I equated the use of certain assistive technology with laziness. However, after starting a new job, I got tired of asking people to pick things up for me; I finally cave and bought the reacher. It has increased my independence and changed my perspective on assistive technology.

Life is about change, it is about learning and growing. The person you are today might not be the person you are tomorrow. You will learn new things, form new opinions and have new experiences, but that doesn’t mean we should discount the things that stay the same. It is the unchanging things in life that give us the confidence to do all the changing along the way.

Rediscovering A Blast From My Past

Because I acquired my disability shortly after birth, I have spent my life using adaptive equipment and assistive technology. Some of these items I still use today, like my crutches and my bath chair. Other items, like my leg braces and adaptive writing utensils, I no longer use at all. Every once in a while though, one of those long ago items will become useful again and I then wonder why I ever stopped using it in the first place.

Recently, I have been struggling with things that slip; like my feet on the kitchen floor, the cutting board on the counter, my ruler on my cutting matt, my butt on the chair in my sewing room. All of these things are frustrating at the very least, and have the potential to be very dangerous. I’ve tried to come up with various solutions that didn’t involve spending a small fortune on non-slip rugs and rubber coated kitchen supplies. I have put blue tape on my ruler and my cutting board. I even considered the possibility of rubber cementing the bottoms of my most used kitchen supplies to see if that would help. Then I had a flashback to my first grade classroom, where my teacher, Ms. Hart used to put prices of blue rubber sheeting under my paper so it wouldn’t slip when I wrote.

All it took was one quick post to a CP forum I am part of to discover an item called dycem; big plus side is that it is available online. Dycem is great; it is tacky on both sides and will stick to nearly everything. It can be cut to any size so I can use it on the floor under my feet, on my chair under my butt, under my cutting mat and ever under my ruler when I am cutting fabric. I can even use it under fabric when I need to trace a template. But that’s not all, dycem is not only good at preventing all manners of slippage, is also great for adding grip to items. It can be used to open jars and bottles, or strips can be added to handles, pens or even a toothbrush to supply a better grip.

Dycem has a million possible uses. And it is not just for people with disabilities. Dycem can be useful to anyone who is sick of having their stuff slide around; I can even see it being a great tool for mothers with young children. Dycem is also reusable and washable, so one small roll can last quite a long time and be used for several different applications. If you find you are regularly putting Dycem under certain items regularly, it can be permanently adhered to any surface with a little superglue. I think I might glue some to the back of a clipboard so that I can finally carry papers around the office without them sliding off my lap. What do/would you use dycem for?

Learning to Ride a Bike

My Dad has always been a huge supporter of me living an “unlimited life”. He never wanted me to be left out of anything because of my disability. When I was little he would help me climb into trees and forts, he took me ice skating and sledding, He and Mom bought me a swing for the backyard play set, and helped my climb a rock wall at fifth grade camp. He has put me on a horse and a Harley – Davidson; he even tried to take me on a helicopter, but mom put the kibosh on that one.

The thing that sticks out the most in my memory, however, was Dad’s campaign to get me on a bike. This campaign lasted well through high school, but it started when we were four and my twin sister and I got big wheels for Christmas. In case you didn’t know, twins always get the same Christmas gifts, it’s in the twin handbook. So even though there seemed to be no physical way for me to ride a big wheel, my dad saw this as a challenge, instead of a hindrance. When my feet kept slipping off the pedals he simply screwed a pair of my tiny shoes to the bike; which solved the slipping issue, but not the coordination issue.

Next, Dad tried a go-cart. He took the wheels off my big sister’s Radio Flyer wagon, a fact she is still slightly perturbed about, and made the body out of wood. He painted the whole thing bubblegum pink, strapped me in using an old belt and sent me off down a hill. It took me approximately six seconds crash into the curb. Turns out, I couldn’t steer, and Dad forgot to add brakes.

When I was 11 or 12 years old, my Mom found an old adult tricycle with a motor and gifted it to me. The motor was shot, but we put some Velcro straps on the pedals, and we found that I could propel myself if I was given a push to get started. That summer, my sister and I spent a lot of time on that bike; we would walk around the block with it, and when we got to the big hill at the top, she would jump in the basket and we would go flying down the hill. I never used the brakes, but I didn’t hit any curbs either. I grew stronger, but I still had trouble with the hills and inclines, so we rigged a pulley system that would help in pulling my legs up, which was where I was having trouble.

It is funny now to look back on these memories; nowadays they have all sorts of adapted cycles for those with and without disabilities. I can just imagine my dad saying to himself, why didn’t I think of that? But his efforts were not in vain; it is from him that I learned how a little creativity and hard work goes a long way, and that as long as you keep trying, you’re bound to get it right eventually.

Photography Gear to Help you Follow Your Passion

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This photo is part of the 100 Snapshots Challenge. It was taken in Chicago with my point and shoot camera.

I have always been a creative person. This creativity first manifested itself through writing. It was the easiest, most accessible way for me to express myself. As I got older, I fell in love with photography. My friends would constantly groan and make fun of me because I had to take photos of everything. When I participated in the “100 snapshots challenge” on Live Journal, my photographs began taking a more artistic turn; I discovered that there was more than one way in which I could express myself artistically.

For years I shot my photos with a small “point and shoot” digital camera. It was easy to carry around and I was able to take pretty decent photos with it. However, I found myself wanting to have more control over my images and wanting to try techniques that a point and shoot just couldn’t accomplish. When my husband bought me a Canon Rebel XSi for Christmas in 2009 I was off and running.

From the start, photography presented far more physical challenges than writing. Obviously I can’t get to some of the places that other photographers might, which is frustrating, but I have found ways around a few of the challenges that photography presents.

My biggest problem, besides the accessibility of some locations, is keeping the camera steady so I can get a nice, sharp image. Single Lens Reflex cameras, like my Canon, are much heavier than point and shoots, mostly because of the lenses. This means you need two hands to take a photo, which is pretty difficult to do if you use crutches or a walker to hold yourself up. Canon has lenses that come with an image stabilizer option, which is awesome and does help, but the feature makes them more expensive. Plus it is primarily for smaller movements, as opposed to the kind of camera shake I was experiencing.

To solve this problem, my husband came through once again, and bought me a tri-pod. I use the Vista Attaras FZ10. This tri-pod is stable enough for me to lean on if needed, which is quite important for me. Another feature I like is that it can be adjusted to almost any angle and height, making it easy to get steady shots whether I am standing, using my chair or want to get closer to the ground. An additional perk is the carrying bag that can be worn across the body or on the back of the wheelchair with very little assistance needed.

The last thing that has been essential to my success as a photographer is my Lowepro Backpack. I bought for my trip to Colorado. It holds my camera, all my lenses, as well as my laptop and anything else I might need or want while taking pictures on the go. I use this backpack whenever I might need to change a lens, even in my own backyard. It keeps all my accessories safe and at hand.

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This photo was taken with my Canon SLR camera on my trip to Colorado.

Photography is a great way to express your creativity and share your experiences with the world. Whether you choose a point and shoot or a SLR, I encourage you to give it a try. If you don’t know where to start, try the 100 Snapshots Challenge. The page has not be updated in ages but the list is still there and it is a great way to get those creative juices flowing.

The Gift of a Doll

For me, living with a disability is all I have ever known. Therefore, I never thought of my life as particularly hard or challenging. The daily struggles I face today are the same, or similar, to the struggles that I have been facing for the last 31 years. Things that able bodied people might consider a struggle are as commonplace to me as brushing my teeth.

That being said, I do have days when I hate the hand I was dealt. Sometimes, I just don’t want to deal with it anymore. It’s usually something small, one too many falls, or a particularly long wrestling match with my shoe, which sets me off. Suddenly, I just want to scream, to punch something, to kick something or break something. My victim during these outbursts is usually my pillow, but a surprise gift from a friend could change that.

See that? Don’t worry, at first I couldn’t figure out what it was either. I thought briefly that the gift had been sent by mistake; or worse, that my friend had lost her mind. I mean, this thing is the kind of ugly that people write songs about. U-G-L-Y. What would I possibly want with it? I started to think it was a gift meant for my dog, (who, as you can see from the photo, also thought it should be for her) until I finally saw the tag stitched to one side.

This ugly little darling is a Dammit Doll. What is a Dammit Doll you ask? The tag declares: “Whenever things don’t go so well and you want to hit the wall and yell, here’s a little Dammit Doll that you can’t do without. Just grab it firmly by the leg and find a place to slam it. And as you whack the stuffing out yell dammit, dammit, dammit.”

Life is funny; I happened to receive this gift right after a fight with my husband. I don’t remember what the fight was about, but I do remember that I did not have to use the doll that day. The absurdity of the gift made me laugh so hard that I forgot about my bad mood.

I still have not slammed my Dammit Doll in to any walls. It’s silly, but a part of me feels bad for her. Most dolls are meant to be loved and cared for. This doll, on top of being ugly, was designed for abuse. It’s a little tragic in my opinion; then again my husband says I am just too sensitive. I don’t know if I will ever use my Dammit Dall the way she was intended; but her presence in my life is now a constant reminder that I am loved, and it is the people who love me that get me through the bad days. They pick me up when I fall, they wrangle unruly shoes and they encourage me to keep challenging myself. They are the real reason I live an Unlimited life. Objects make certain things easier, but their support makes things possible.

Escaping the Wrong Relationship

I’ve been writing for dozens of disability websites for around 15 years, and giving relationship advice has been when of my fortes. I’ve always prided myself on giving people the tough advice no one wants to hear. When you’re disabled like me the tough advice is the most important.

I only bring this up because I’ve been terrible lately at taking any of the advice I have given. I think every girl out there is guilty of doing this – we like to tell everybody what they should do, but we struggle at taking the tough advice ourselves.  When you’re actually in the thick of it – it’s a lot harder to do the right thing.

This is especially the case when we find someone we really really like; the type you’d see a future with. The love that’s there can be strong, but we overlook several things about their personality in the process. I’m embarrassed to say that I’ve done this several times. Being a girl can really be annoying sometimes; and I blame these poor decisions wholly on my extra emotions and hormones.

So…what ends up happening is that we fail to end a relationship that needs to end.  Many of us with disabilities are afraid of being alone.  When I was younger, this was something I worried about a lot. I really believed there wouldn’t be that many people out there who would be ok with my paralysis. As it turned out however, there are a lot more people than I thought (oh how I love it when I’m wrong).

Another fear a lot of us hold onto is worrying about no longer having your significant other there to help. When you’re in a long-term committed relationship and you have a disability, chances are your partner will do certain things for you and you might have come to rely on it. A lot of fear can lurk behind losing your independence in a breakup.

But we’re just like everybody else when it comes down to it. When the love isn’t reciprocated both ways it can break your heart, but still…many of us don’t want to fully sever ties. We can be hopeless romantics and hold out hope that things might turn around. At least that’s how I feel that things.Many of us with disabilities are pretty romantic people.  Saying goodbye for good is one of the hardest things to do.

But when the break-up finally happens, a huge relief occurs and your future again looks bright.Maybe you don’t see the brightness right away and all you see is an unending line of mediocre dates, but there is brightness there (you just don’t see it yet). Ending anything you still find some joy from is never easy.  You really have to put on your grown-up pants and just do it.

You should also indulge in your favorite break-up activities.  I myself have a handful of go-to items when a break-up occurs: 1) My favorite chick-flick movies and TV shows, courtesy of my favorite website Netflix (anything that’s a period piece is currently in my queue). 2) Video games, especially RPG ones, courtesy of the online gaming community/network and store, Steam (you gotta love being able to get games for your computer without leaving your house). And 3) Foods that make me happy. This typically involve ordering pizza; Papa John’s with garlic sauce is where it’s at, as well as lots of baked goods (lots), and a nectarine thrown in for good measure so I don’t feel guilty.

Communication and relationships are without question the hardest thing about being human. We’re constantly learning lessons, growing as people and ending relationships is one of the biggest of them to learn. I wish all of you the strength to be able to do this one day.

And when you find that strength, have your break-up kit ready to go. You’ll do fine I promise. I always see the light after every break-up.  It’s hard, but when you see it, it’s the most beautiful light you’ve ever seen.

How have you ended an unhealthy relationship?

Break-up Kit Musts

– Netflix

– OrderPapa John’s online (love this)

– Steam game network

 

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