Category: Helpful Tips

Be your own advocate, productively

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There are times when it seems like things take forever, from planning something to securing funding, to hearing back about a job interview. The easy thing to do is sit there and wait for something to happen but I’ve learned over the years that it’s important to keep communication coming from your end in order to make sure things proceed in a timely manner. Here are some tips and tricks for being your own advocate whether it pertains to your disability or life in general:

1) Remember you’re not the only one

Because something is important to us, it’s easy to assume that our issue MUST be the most important thing on the other person’s plate. But the fact is that people like caseworkers, insurance representatives, non-profits employees, and corporate representatives have a lot on their plates. They may be servicing a lot of people. Some people are really good at keeping you in the loop with their progress, but in my experience, most are not. So remembering that you’re not the only one accomplishes 2 things: First, it gives you permission to follow-up within a reasonable time frame if you’re not being helped. Second, staying aware that you’re not the only one keeps you grounded. Sometimes it’s not all about us. This allows me to focus on the next tip…

2) Stay positive and stay thankful

Unless someone you are working with definitively wrongs you in some way, then it’s best to stay positive and grateful with whomever you’re working with. Are you more likely to help out someone who is nice to you or someone who just yelled at you? I always exude gratefulness with anyone who is working to help me in some way, especially when I am following-up on something they may have forgotten about or have been just too busy to take action on. This is especially important when the person helping you is bound by laws or restrictions that are beyond their control. Sometimes the bureaucracy is not their fault.

3) Know when to escalate

If you’re working with someone who may not seem like they can get the job done, don’t be afraid to ask for a manager or supervisor. If you start to feel like you’re getting the run-around, then by all means ask to speak to someone else or call that person directly at another time. For me this usually boils down to a gut feeling that “Hey, this person isn’t going to be able to help me…” and I move on to someone else.

4) Offer to help however you can

If paperwork needs to be filled out or something else needs to be done, then offer to help! It may get things done faster, especially if it’s something important to you and you’re willing to spend the time on it. This also creates a feeling of good faith and teamwork with whoever you’re working with.

5) Don’t give up!

If being nice doesn’t work, then by all means, you are allowed to complain! But only to the right people and only if you are completely informed about the situation. There are times when actual laws need to be followed in order to provide accommodations or services. Asking about why there’s a delay or what you can do to get things done faster is a good place to start here. If that doesn’t work, then be a pleasant pest. In other words, be polite and thankful but be FREQUENT with your inquiries about status — especially if it’s just a matter of finishing paperwork or getting an approval. Rarely have I gotten to this point myself, but one time I was leaving pleasant voicemails every day or two on someone’s phone in order to keep them moving on my issue!

Naturally, every situation calls for different tactful measures to make things stay on track. But the above tips have worked for me on several occasions. If you have your own tips, feel free to share them in the comments section!

Neat culinary idea for disabled

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I was reading about the MDA national achievement award winner, Scott Crane, and saw that he helped start up an organization that helps people with special needs experience culinary adventures! I love it because it’s an angle on helping disabled people that is rarely taken. Food is an essential need, but this kicks it up a notch.

The organization is called “In Chef’s Hands” and seeks to provide food therapy to people with disabilities who love food — and who doesn’t! Although I have not participated myself, I find the concept extremely interesting and might just have to sign-up!

Check out the “In Chef’s Hands” website for more information.

Challenges are an opportunity for creative thinking

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I have fallen on my face more than a few times in my life. Prior to using a wheelchair, I would find myself on the floor a couple times a year. Since I lived by myself, there usually wasn’t anyone there to help me get up from the ground right away. My first instinct was always to scoot across the floor and get to a phone, which I did the first few times. But there came a time when I decided to challenge myself to get up off the floor on my own, somehow.

I looked around the room and asked myself, “What can I use to get up off the ground?” Within a few seconds I spotted a pile of books and binders. I also spotted some pillows. Fortunately I had a little rolling office chair right next to me that I could stand up from on my own. So all I had to do was get my butt up high enough so I could scoot onto the office chair.

One thing I can still do now is lean my body such that one side of my butt lifts off the ground. This proved to be extremely valuable in this situation. I decided that if I could lean enough to one side, I could shove a book underneath the side of my butt that was off the ground, then lean back onto the book and instantly be higher off the ground. Next I could lean to the opposite side and slide another book under the other side.

Pretty soon I was sitting on a pile of binders and books a foot off the ground and I’d run out of books. That’s when the pillows came into play. I just needed a few more inches and I could scoot onto the chair. So I did the same thing with the pillows — lean my body and shove a pillow under myself.

Although the books were sliding a bit and the pillows weren’t very even, I did get my butt up high enough to scoot onto the office chair and finally get back up on my feet.

The process took about 30 minutes or so, which seems ridiculous, but it was a valuable 30 minute lesson I remember to this day. If I am ever presented with a challenge, I look around (physically and mentally) and see what I have available to me to overcome the challenge. Then I think of creative ways to use these tools in combination with my skills to solve the problem. This can be applied to anything from actually falling on your face to solving problems at home, work, or school.

Try it sometime and see what you come up with.

Finding the right support group

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A support group can do wonders to help you feel less alone when dealing with a disorder like muscular dystrophy. For some people, traditional support groups are great. These are usually support groups created by organizations that already focus on a particular disorder. For others, support can be found in a variety of places, both related and unrelated to your disorder. Here are some tips about support groups and how to find one that fits you.

Traditional support groups, in my experience those facilitated by the Muscular Dystrophy Association, can be a valuable way to meet others going through the same thing. These support groups also foster social activity and provide information related to the disorder and activities/events outside the scope of a disorder. After all, a support group does not have to revolve around a disease 100% of the time.

Along those lines, sometimes a support group only has to be indirectly related to what you’re going through in order to be effective. For me,  the wheelchair tennis community became a great support group even though that is not the intent behind competitive wheelchair tennis. It’s just a bonus. Being able to see others dealing with disability in a positive manner is incredibly empowering no matter what the setup.

A third type of support group is the group that has nothing to do with disorders or disability whatsoever. This could be an interest group, or a dining group, or a church group. Sometimes the support you need can come from people who aren’t even familiar with your condition. After all, there’s a human element of support that we all need to get along.

Lastly, there’s the online support group. This sort of group can take any of the above forms but you participate in it online only. I have met several people as a result of starting this website and have only ever communicated with them via emails or online postings. This sort of support group can be a nice virtual network to fall back on when you’re just sitting at home and want to be connected.

Overall, finding the right support group is like finding the right pair of shoes. You can try out however many you need to, see what fits, and then go with whatever is most comfortable and beneficial to you.

If you think you’re not good at something…

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…have you even ever tried?

How often have you marveled at someone who could do something creative or spectacular like paint a picture or write a song or play an instrument or sew a dress or build a motor or _INSERT AMAZING THING HERE_?

I know I have, and still do, all the time.

How often have you also thought, “Wow, I could never do that” or “I’d never be good at that?” I know I’ve done that too.

But the fact of the matter is, many people say things like that but have never actually tried to do any of the amazing things they admire. I’ve done (or not done) that too.

Who do you know that comes home from work and starts writing music or paints a picture? Very few people actually do this and sadly, few have even ever tried.

This is a "painting" I made one day in Photoshop. I actually ended up liking it enough to have it printed and framed and it's hanging in my house, reminding me to try new things.

You don’t have to be Picasso to paint. You don’t have to be Vera Wang to design a dress. You don’t have to be Paul McCartney to write music. You don’t have to be Shakespeare to write a story. Anyone can do any of these things any time, you just have to be willing to try.

You could write a song right now. Go for it. Just make up a melody and sing some words. It can be ANYTHING. Kids do it all the time. Record it if you want to.

You could write a short story right now. Go for it. Make up a character and a setting and put on paper what that character is doing. It can be a few sentences, paragraphs, or even pages. You could even just say it out loud.

You could design a dress right now. Go for it. Draw a dress on a piece of paper. Color it in. Bingo. There’s your dress.

You could paint a picture right now. Go for it. Grab a piece of paper. Take out some paint if you have it, and if not, take out the ketchup and mustard from your fridge. Use your finger if you don’t have any brushes. Or if you are familiar with Photoshop or a similar program (this one’s online and free), open it up and “paint” something virtually. Sign your name on it when you’re done.

The best part is that none of the above has to be good, great, legible, or pretty. First tries rarely are great.

And who knows, maybe your first try will be great. If not, practice and try again. Practice will make you competent at virtually anything.

Then after you’ve tried a bunch of things, or the same thing over and over again, you will look back and be amazed with yourself like you were with other people.