Accessibility

While browsing Facebook over the weekend, I came across a post I see every year around this time:  Sign up for MDA Camp!  This post, shared by my younger brother who’s been a volunteer counselor since he was old enough, got me thinking.  I had 11 years at MDA camp. They were always the highlight of my summer, and I missed my friends after the week was over.  When I talk about it to other people, they understand the concept of camp, but they don’t get the concept of MDA Camp.  The two are very different things.  I thought today was a good day to explain just how different they are.  I’ll also explain why MDA Camp was one of the best things that ever happened to me as a disabled person.

What is MDA Camp?

For those that don’t know, MDA Camp is a week long overnight summer camp for kids 6-17 who have Muscular Dystrophy (MD).  During camp, campers are each assigned a counselor to help with whatever they need or want to do. All activities are made accessible, including things like rock climbing, zip lining, and horseback riding.  You do crafts, sing karaoke, pull pranks…the full camp experience! But there’s something MDA Camp has that other camps don’t: MD.

The MD is the Best Part?

You wouldn’t think that the disability requiring the need for a special camp would be the best thing about it, but hear me out.  Camp is a social time. For lots of kids, including myself when I was that age, it was the only time I saw kids like me. I didn’t have friends in wheelchairs.  I didn’t know anyone who used a vent to breathe. Even if I did, we weren’t close and they were a “scary adult”. But year one of camp, I met 50 people who were like me, of all ages.  My first camp friend and I bonded over having the same color of wheelchair. It was simple, but it had never happened to me before. 

Having kids of all ages with MD was another blessing of camp.  MD is progressive, and gets worse over time. For example, younger kids with Deuchens might still be able to walk, but older kids might already have a trach.  The beauty of this is it somewhat normalizes the change. When I needed a bipap for sleeping, I wasn’t as nervous because I knew 10+ people who used it. When I got older, I was able to be that example for the little kids.  These changes are always going to be scary and sometimes unpleasant, but camp made them less so.

Activities

Like all camps, MDA Camp did a lot of fun activities during the day.  We made candles, we had relay races, and went canoeing. Nobody was left out of these activities because of their disability.  For a whole week, nobody had to wonder, “can I physically do this?” You were never required to participate, but you were highly encouraged.  There have been several occasions where people can’t believe I’ve been zip lining. Honestly, neither can I. I hate heights!

Looking back, some of my favorite activities (aside from chilling in the cabin and talking) were the ones that incorporated our disability.  For example, one year there was a contest for “Best Decorated Mobility Device”. We spent all day crafting for our wheelchairs, scooters, or shoes if the person could walk.  Another time we got to drive over paint to make art, which was a personal favorite of mine. These are all things you can’t get at a non-MDA Camp!

The Counselors

It would be a tragedy if I didn’t make mention of how awesome the counselors are.  They’re volunteers, and each camper gets one. At my camp, they tended to be college-age to early 30’s, but there was a wide range.  Regardless, all of them were spectacular. Why am I making specific mention of them? One reason is because my two brothers are counselors and they tease me about being too old to go now.  The real reason is because Camp wouldn’t be possible without them. My counselors pushed me to try things I was scared to do but ended up loving.  

Truth be told, my first thought was that it’s a bit early for a blog post about a camp in June or July.  But my hope, with posting this now, is that someone who sees this knows someone who could use Camp. Maybe you know a kid with MD who would make a good camper.  You know even know someone who’d want to be a counselor. Or maybe you would make a good counselor.  Waiting until the summer would be too late.  If you take nothing else from this post, know that this week changes lives, and I’m so grateful for the memories I made every summer.

One would think that, in this day and age, a public place being accessible would be a given.  Unfortunately, that’s not the case. Even newer builds, who often boast about how accessible they are, often have things that are inaccessible to certain people.  They follow the laws of the ADA (or equivalent), but that doesn’t mean it’s always going to work. Everyone’s disability is different, and therefore what works for one person might make things harder for someone else.  The theory of universal design is to make things accessible for everyone, but is this theory actually something that is achievable? Can you make a building that everyone, regardless of ability, can use equally to it’s full intended purpose?  We’re going to discuss the importance of Universal Design, and attempt it!

What the ADA Says

Let’s start off with what the ADA has to say as far as the construction of the building.  The ADA has a whole section on the standards a building must adhere to in order to be in compliance.  The ADA focuses more on Accessible Design, which is a more focussed aspect of Universal Design specifically to design for people with disabilities.  However, there are workarounds for them and the specifics are very vague. 

The Importance of Universal Design Beyond Disability

Let’s take the disability completely out of the picture for a moment and talk about something able-bodied people use almost everyday without thinking.  Let’s talk about stairs. Chances are, you take at least one set of stairs a day. Maybe it’s only one step. Did you know there is a standard for the height of those stairs?  You don’t have to think about it, because you’re so used to it. The standard of a stair’s height is an example of universal design, because it works for everyone who uses it.  It’s a bit of a funny example when we’re talking about a group of people who can’t generally use stairs, but it works.

Now imagine if those kinds of standards were implemented for everything.  Imagine if everyone could go to the shops and not need lots of assistance.  That’s what universal design is. The importance comes from giving a person the ability to do the thing on their own.

Is Universal Design Achievable?

Let’s start off with a story illustrating how difficult Universal Design can be.  When I was in elementary school, our public library was always very accessible. All one floor, open aisles, the librarians were always there to help if you needed.  But the library still wasn’t accessible for everyone. There was this elderly couple who used walkers as mobility aids, and the brick pavement made it near impossible to get in.  The pavers aren’t smooth, and the cracks caught on the walker. This issue isn’t something that you would think about unless you went through it, or it’s brought to your attention.  

The Best Way to Implement Universal Design

Universal Design is implemented the easiest when done from the beginning, so let’s do that.  Let’s say you want to design a new office building with Universal design, going above and beyond ADA.  How can you design something with Universal Design if you don’t know what issues someone might face? What do you do when different things work better for different people?  The important thing to remember is it won’t happen overnight. There are going to be things that are brought up three weeks, six months, or even 20 years from when you “finish”.  To get a good start, go to the source.

From the very beginning, consult people with disabilities.  Have a committee of people with a variety of disabilities and needs.  Figure out what things they need to make the building accessible. Do they need certain things in the bathroom?  Does the elevator need to be a certain size? What are things in other offices that they can’t do that they wish they could?  Keep these in mind and make sure you can implement these while complying with the ADA or other governing body.  

The needs of the committee might contradict each other.  For example, one person might need automatic door buttons at a higher place, but it’s too high for others.  This is an easy fix, as you can place two buttons, but unfortunately they’re not all that simple. A lot of times there’s a third option that works for both, it just takes a bit of creative problem solving.

That’s the main issue with Universal design. Nobody has the same needs.  It’s difficult to make everything accessible to everyone if needs contradict.  Unfortunately, there’s not always a solution. There’s not always a middle ground.

But what do you think?  Is Universal Design possible?  What are some ways we can make public spaces more accessible to everyone?  If you have a disability, what is something that you wish was more standard as far as accessibility goes?

Requiring help to live your daily life is something loads of people with disabilities are familiar with.  There’s something unique about it, and the lessons that go along with it are certainly one of a kind. Since going off to college and having to rely on help other than my family, I’ve noticed several truths about hiring a PCA, training them, and managing a team.  In the past, we talked about hiring new PCAs. In this blog, I thought it would be fun to share some of the hidden truths about managing them!

Hiring Never Stops

Unfortunately, the position of PCA seems to have a lot of turnover.  The longest I’ve had a PCA is 3 years, but that was because we both went to the same university.  Outside of that, it was less than a year-and-a-half. Though there are anomalies, the unfortunate thing is that because of various reasons, PCAs just don’t last very long.  Even when you have a fully-staffed team, you’re always looking for another person. You never know if someone is going to quit unexpectedly, or need some extended time off.

Your Gut is Usually Right When Hiring

I’ve held several interviews where I hired a person I wasn’t enthusiastic about, simply because I needed someone.  Whenever I’ve done this, something happens and the PCA doesn’t last. It’s for the better. Trying to force it to work will just lead to more work and headaches and stress that neither of you need.  You’ll end up wasting time you could have used finding the right fit.  

Now this isn’t to say don’t give someone a chance based on a bad first impression.  One of my best PCAs was very quiet and timid during her interview, but she was one of my best.  If I had decided not to hire her because she barely talked at first, I would have missed out on one of the hardest working PCAs I’ve had.

You’re Going to Repeat Yourself A Lot

Since you’re never going to stop hiring, you’re never going to stop training.  I’ve gotten really good at explaining my morning routine, for example. Throw in multiple PCAs, you might end up repeating yourself 15+ times a day, on a good day.  I wouldn’t say this is a bad thing, necessarily, but I do find it funny when I repeat things to the same person because I forgot who I’ve told.

A Good PCA Rarely Lasts Long

Unfortunately, that model PCA doesn’t stick around.  In my experience, these PCAs are using the job as a temporary gig.  Usually, it’s because they’re in nursing school, or a higher-paying job gets offered to them.  The good news here is that, if they’re in nursing school at least, they probably know someone else who is looking for work.  Nursing schools are a never-ending supply of potential PCA’s.

You Become Great at Making Lists and Organization

I’m the first to admit that I could be more organized.  But I shudder to think about how bad I could have been if not forced to.  When you have a team of people who work for you, it’s important to be on top of things.  For my PCAs, I need to know where certain things are so I can tell them where to look, for example.  I usually keep a list of things I need done (mopping, vacuuming, laundry) so I don’t forget to have a PCA do it when they’re here.  This might sound a bit excessive, but the more organized I keep my life the less stress I put me and my PCAs under. Things just go a lot smoother.

You’ll Get Lots of Leadership Experience

Effectively, you are a manager.  You set the schedules. You assign tasks.  You handle disputes. You probably even handle payroll.  These are all things that qualify as leadership experience.  Why not put this on your resume? These skills will transfer over.

You’re Not Alone

What keeps me going when I’m frustrated with my PCA situation is that I’m not the only one going through it.  I’ve got a group of people that I’ve met online who require the same kind of help and have the same experiences.  Not only are they a great group to commiserate with when I’m frustrated, but they’re idea generators. I’ve gotten so many good tips and tricks for hiring and training PCAs from Facebook groups.  People with similar life experiences as me know what I’m going through. When I get excited about a new hire going well, they get excited in a way my other friends can’t relate to. It’s sappy, but remembering these people have my back keeps me determined to push through any PCA frustrations I may have.

And that’s only a few truths you might not have known about managing a PCA team!  Did you learn something new? If you use PCAs? Do you agree? Disagree? Did I miss something?  Comment below!

There are certain things that people with disabilities deal with every day.  It varies from person to person, but one similarity is that we all face certain myths and stereotypes about us and our disability.  Most of these myths are outdated ways of thinking, but are still around nonetheless. Today, I hope to debunk some of these myths and explain why they are harmful to people with disabilities.

Myth 1: You Can Tell We Are Disabled Just by Looking at Us

The first myth about disability is that you can’t always tell that someone has a disability. For example, you can’t tell if someone has a seizure disorder on sight alone. There are visible and invisible disabilities, which lots of people often forget.  Thinking that you can tell just by looking at someone is harmful and perpetuates the stereotype that disability looks a certain way.  Some people use walkers, some use wheelchairs, some don’t need a mobility device. Some people are in pain all the time. The scope of disability is so vast that to try and tell someone “they don’t look disabled” is rude.  You can’t tell, much like you don’t know what someone’s name is without being told.

Myth 2: We Know That Guy You Used to Go to School With 

No, I don’t know your cousin’s best friend from 15 years ago who “either had a hearing aid or was blind, I can’t remember.”  Do you know everyone with your eye color? With your name? There are a few things wrong with this assumption. There are almost 50 million people in the United States with some form of a disability.  I don’t know that many people, and don’t know anyone that does. Then if we narrow that number down to people who have my same (or similar) disabilities, it’s statistically unlikely. There’s not a magic club, we don’t all have matching jackets–as cool as that would be.

I do want to add, in my experience, this myth has become frustratingly more and more true.  There are tons of Facebook groups to be part of, I’ve found myself saying “Oh yeah, I know them!” more often.  This is a blessing and a curse, really. While it’s good to have a support system of like-minded individuals, it’s not helping the “we don’t all know each other” sentiment.

Myth 3: Yoga is a Magic Cure-All

No.  It’s not.  It might help a bit, but yoga’s not going to get rid of the disability altogether.  And chances are, we know this from experience. Most people offer this (or similar) as advice like they’re the first to think of it.  Chances are, we’ve heard it five times that day.  It’s nice of you to try and offer help, but we know our bodies.  If we say yoga doesn’t really do much, but our medication does, please leave it at that.

Myth 4: We Sit at Home All Day Because We Want To

Trust me, there are days when staying in bed all day sounds like the best idea ever.  But doesn’t everyone? I’d love to be able to go out everyday and knock out my todo list, but there are multiple things standing in my way (no pun intended).  First and probably most important, I need help. Lots of people with disabilities need assistance getting out of the house, but not enough assistance to actually do so.  I have a certain number of care hours a day, and need to get certain things done in that time. Disabled people also often get tired easily. We may want to go out and do something, but we use up our energy for the day.

Myth 5: We Did The Thing, We’re Healed!

Just because we did something we don’t normally do doesn’t mean we can do it perpetually.  There are people who can lift 500lbs, but having them do that repeatedly is bad for their bodies.  It’s a similar situation. Just not as spectacular. Sometimes you just have a good day and can walk a bit instead of using your wheelchair.  Sometimes you can barely get out of bed because you’re in so much pain. What we’re able to do on any given day fluctuates, sometimes even within a given day.

Myth 6: My Friends Are Saints for Being My Friend

My Friends Are Saints for Being My Friend. Trust me, they’re not.  I love my friends, but they don’t deserve a Nobel prize for being my friend (although we do joke about that).  This sentiment is awkward and frustrating to both the person with a disability and their friends. My friends like me because I’m funny, kind, and usually have snacks.  My wheelchair has zero to do with my disability. Heck, I have friends that I met online first, and we were friends long before they knew I was disabled. 

Myth 7: We Are An Inspiration For Going to the Shops

I have been called an inspiration for entering Walmart.  If needing snacks for a road trip to a concert is inspiring, thank you.  But I’m wondering why doing something so trivial as going shopping is inspiring?  Is everyone in the shop an inspiration?

Myth 8: We Have to be Watched At All Times by Our Carer

I would lose my mind if I didn’t get any alone time.  There are extreme cases where this is true, like for some people with vents who may need constant help. But even that isn’t true for everyone.  Most people with disabilities can and will do things independently whenever possible. If you see us in public alone, don’t worry. We know what we’re doing.

Myth 9: We Can’t Do [Thing]

If I could count the number of times I’ve heard “you can’t do that in a wheelchair”, I’d be here all day.  I’ve done rock climbing, zip-lining, and horseback riding just to name a few things. I went to college on my own.  I have friends with more severe physical disabilities than I do that have gone sky-diving. Trust me when I tell you, if someone wants something bad enough, they’ll figure out a way to get it.  Disability doesn’t even factor in.

Myth 10: The Only Disability is a Bad Attitude

This is a simple explanation:  No amount of positive thinking is going to make me walk.  Trust me, I’ve tried.

Wheelchairs come with the bare essentials.  We don’t get choices of seat-warmers, back-up cams, or a lot of things cars do.  But that doesn’t mean our wheelchairs can’t be made functional. Out of necessity, people add modifications to their wheelchair, scooter, and other mobility devices to give them more features.  Some are expensive and unnecessary, like attaching a nerf gun to your chair, but others help with everyday life and independence.  Not all modifications need to be complicated to set up. In fact, some of the best ones are easy to install and cost less than $50.  

Cup Holder

I always try and keep water or a drink with me, but it’s not easy to carry.  Having it in my bag is fine sometimes, but I can’t always reach it. There are all kinds of cup holders made with clamps for things like bicycles that work great on wheelchairs, and can be put wherever you want!   Pair it with an extra-long straw and you’ll never go thirsty again!

Selfie Stick

For people with limited strength, it can be challenging to hold up their cell phone for any length of time.  Having something that holds it, like a selfie-stick, and keeps their hands free gives them independence.  Being able to reach your phone is something that can be difficult for people with limited mobility, and having it easily accessible is essential. Selfie sticks are cheap, retractable, and can be fastened with zip-ties. Being retractable is handy for when the stand isn’t in use. 

USB Charger

This was something I didn’t know existed until recently, but I absolutely love it!  For those in power wheelchairs, there’s an adapter that plugs in where you charge your chair, and has a USB out.  This means you can charge your phone, tablet, or even power something small using your wheelchair’s battery.  From experience, it doesn’t drain your chair too terribly much. The big downside, is that when it’s plugged into your chair, the chair treats it like it’s being charged. So that means you’re stationary.  

Rim Lights

If you go out at night a lot, you probably have some sort of light or reflector on your chair to be seen by traffic.  Why not make it fun? There are all kinds of rim lights for bicycles, you can easily put those on your chair.  There are options that allow you to control the lights via your phone, which boosts independence even further.  They also come in many different colors, so you can customize your chair to fit your style. Safety doesn’t have to be boring, and neither does your wheelchair!  

Umbrella with Clamp

Unfortunately, power wheelchairs aren’t waterproof.  Getting them wet can cause wires to short-out and quit working.  Your life can’t be put on hold when it rains, so you need to be able to still go out.  There are many wheelchair-friendly umbrellas that are longer and have a clamp so that you don’t have to hold them.  These umbrellas keep your whole chair dry, not just the center.

Wheelchairs and other mobility devices are expensive, but that doesn’t mean we should deal with their shortcomings.  There are many simple modifications to make your chair work for you. We’ve mentioned a few inexpensive ways to improve the function of your wheelchair, but there’s many more ways to make your chair more functional.  What are some mods you’ve made to your chair? Comment below!