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Putting the “Us” in Inclusion

Selfie of Jeffrey VanDykeBy Jeffery Vandyke, Graphic Design Specialist

Having a disability shouldn’t define who a person is, where they can go, or what they can become, but for many of us with a disability that’s exactly how it feels.

We live in a country that’s thankfully progressed significantly in many areas (with much more still to be done) in achieving equality for various groups in recent years, which is fantastic, but with each step forward, its growing increasingly frustrating to see that those with disabilities are still being ignored on a daily basis. Whether it’s in the form of thoughtless design in regards to public spaces or the continued lack of representation of individuals with disabilities within the various entertainment platforms.

I feel as though individuals with a disability aren’t necessarily viewed as people, but more so as an after thought. It happens all too often, a business is listed as having accessible facilities, but once inside you discover that even though the arrangements may accommodate some, it doesn’t necessarily fit all… rendering a business (no matter how great it may be) as a negative establishment in the individuals eyes. Furthermore, reinforcing the negative self talk that many with a disability already battle, which is thinking of themselves as an inconvenience.

All in all, exclusion for members of the disabled community is becoming far too common a problem and needs to be addressed with greater frequency and met with the same urgency that other demographics concerns are met with.

As stated earlier, within this past century, we’ve seen dramatic changes in our society, which has led to some great strides forward, but we still have miles to go before until all persons with a disability have an equal chance to live the lives they choose, free from the barriers they face, both physical and metaphorical. It’s time that we not only become participants in the conversation for change, but we ask that you join us in our fight for inclusion for all.

After all, a better world for the individuals within the disabled community today, means a better world for those who will become disabled in the future, which will undoubtedly affect you or someone you love at one point or another.

Living Life is Not “Inspirational”

Selfie of Jeffrey VanDykeWritten By Jeffrey Vandyke, Graphics Design Specialist

Because I have to use a wheelchair to get around, my disability is very apparent. You may not know the specifics, but there’s typically a big visual difference between a generically designed wheelchair and those that are a custom fitted piece, which makes me standout like a single neon light in a dark room.

With this comes a wide range of responses from strangers… some unfortunately avoid you on sight like you have been infected by the 2019 version of the plague, others are thoughtful and present their best smile; but then there are also those well-intended, but less than impressive comments, which belong to the “I’m so inspired by the courage you display by in public” or something similar to that affect crowd.

Don’t get me wrong, I understand the intent and I appreciate the encouragement, but let’s be real… I either go out in my chair or not at all. Life with a disability for many of us is no more of personal choice than the length of our finger(s), mole on our arms, or shade of our skin. We can either make the best of what we have or not, it’s completely up to the individual living with the condition.

See, all things considered when strangers tell me I’m an inspiration simply for being out and about, it feels as though there simply congratulating me for getting up in the morning. They know nothing about legitimate things I have achieved or had to overcome in my life that might actually qualify as inspirational. I’m seen by strangers as an inspiration because despite my disability, I’m still living life. The way I see it, anyone can choose to get up and live life despite whatever challenges they may face. That’s not what makes someone inspirational. The things they accomplish while living their life and facing the many obstacles it brings are what qualify them as inspirational.

A diagnosis or disability in large part is placed upon you randomly… no approval needed. Our only real option is to continue to live our lives as best we can. Is this feat inspirational? Perhaps, but please don’t confuse what we have to manage with what we do, WHILE we’re managing. If you are a person who is aware of some of our genuine life achievements, we will gladly accept an “inspiration comment,” but there is no need to point out how inspiring we are if you are only referring to our ability to live life like anyone else.

Behind every perceived celebration…is another’s nightmare

Selfie of Jeffrey VanDykeWritten By Jeffrey Vandyke, Graphics Design Specialist

 

Behind every perceived celebration… is another’s nightmare.

I understand that for many… the 4th of July and the many festivities accompanied by the eagerly anticipated closing fireworks present what is generally perceived as an exciting cap to a great time.

However, behind every smile, ounce of laughter you hear, and time spent enjoying company… also exist those that are struggling with numerous things today, such as PTSD, anxiety, startle reflex, etc.
Specifically in my case, (and in the cases of so many others who also have Cerebral Palsy) we have a unique neurological wiring, which generally results in an extremely sensitive startle reflex. The startle reflex (also termed “Moro reflex”), an involuntary physical response to unexpected sensory stimuli, is exceedingly common in children and adults with Cerebral Palsy. Although the Moro reflex typically lasts from birth to 3 to 6 months of age, this response generally remains into adulthood for those with Cerebral Palsy, due to the neurological differences present in those who live with the condition. To sum it up in the simplest of terms? We flinch at unexpected, loud sounds.

Personally, I jump at every sudden change in my environment. My body tenses. A seemingly uncontrollable surge of anxiety rushes through my heart as my brain works in overdrive to anticipate the next sudden sound, which causes my body to pulsate in anticipation, which is horrifying at times. All in all, the 4th of July puts an extra strain on all those who are battling something.

This, for me is extremely exhausting and I’m sure, many others would agree. Thus, I especially wanted to share this… not to make you feel bad or to ruin your festivities, but to give you insight into a common struggle that is typically left out of the conversation and to spread awareness on behalf of all of us.

With that said, Happy 4th of July my friends, enjoy the festivities.

Motivational Monday – Ade Adepitan

Ade Adepitan

Ade Adepitan (born 27 March 1973) is a British television presenter and wheelchair basketball player. He uses a wheelchair as a result of contracting polio as a child which led to the loss of use of his left leg.

2005: Made a Member of the Order of the British Empire (MBE) for services to disability sport in. He was also presented with an Honorary Doctorate from Loughborough University, in recognition of his outstanding services to, and performances in, disability sport.

2005: Awarded a ‘Certificate of Excellence’ by the Champions Club UK in recognition not only of his efforts at promoting disability sport, but also for being a positive role model. He was particularly commended for his strong and persistent message of hope within the young black disabled community

2010: Presented with the Lifetime Achievement award by the University of East London

2010: Honorary Doctorate conferred by the university in November 2010

 

PAINTING FOR A PURPOSE!

Group shot of all who participated holding their paintings of the Muskegon Pere Maquette Boardwalk

What a fun night of painting!

PAINTING FOR A PURPOSE, was held at The Coffee Factory with Create.a.frame ART studio benefitting Disability Network West Michigan. We are celebrating 20 years of serving those with disabilties in Muskegon, Oceana, Newaygo, Mason and Lake Counties!

We painted our beautiful accessible walkway located at Muskegon’s Pere Marquette Beach, personalizing and making it our own under the direction of Lacy, our professional artist!

Thank you to all who participat

Honoring our Fallen Veterans

Veteran Howard Fisher placing flag on gravesite
Many of our Veteran Connection Group members and Deputy Director & Veteran Will Wilson participated in placing flags at the gravesites of our fallen soldiers at Mona View Cemetery during the Memorial Day weekend. We remember and honor all who served and paid the highest price for our freedoms. Pictured: Veteran Howard Fisher placing flag at gravesite.

A love letter to my Cerebral Palsy

Selfie of Jeffrey VanDykeBy Jeffrey Vandyke, Graphics Design Specialist

A love letter to my Cerebral Palsy

Dear Cerebral Palsy,

 You haven’t always made it easy for me. In fact, you’ve been a pain (quite literally, for as long as I can remember), so much so, that I hated you. I didn’t understand why I couldn’t just be “Normal.” I wanted the chance to run alongside my sister, to play sports or just go for a walk. So many of things most typical people take for granted, I’ll never be able to do.

My body is caught in the middle of a tug of war in between what my mind wants to do and what my body will physically allow. However, as time has gone by and I’ve become more comfortable with my body and I’ve learned my abilities (not just my inabilities). I have grown more fond of you.

Don’t get me wrong, the struggles I’ve faced have been mighty and I won’t lie and say things are necessarily easier now, but it is because of the struggles that you have brought with you… the constant surgeries (I lost count at 25?) the bullies, the doctor’s appointments, hospital stays, the scars, and countless daily challenges that randomly seem to appear on a moment’s notice, that I am who I am today.

Yes, I do still have pain, my speech is still occasionally slurred, my movement isn’t as quick as it once was, and my body doesn’t cooperate as much as I’d like, which is frustrating, but I feel like I am also stronger than I ever could’ve been, had I been able to live life without your companionship. Due to the bullies, I am kinder to others because I know what it feels like to be made fun of, because of the constant, ever-changing adversity I am more resourceful, and because of the hardship I am driven to use my life and take advantage of every opportunity to make this world a better, more kinder place for all… disability or not.

I may never be medically healed of Cerebral Palsy as it’s not physically a possibility at this time, but I’ve learned that it’s also not necessary. Throughout my journey, I’ve learned that the only real healing I ever needed was to learn to accept myself as I am today, rather than judging by someone else’s definition of what was “Better”. It is through my greatest weakness, I found my strength. I choose to be happy and positive because life is beautiful and meant to be lived to the fullest regardless of diagnoses, societal expectation, or stigma. It may not be a straight path, but a crooked path is better than none at all. All in all, I hope my life helps someone else know that no matter what obstacles you might face; you can still not only follow your dreams but achieve them as well. So today, it is with much gratitude that I say I appreciate you, Cerebral Palsy… I wouldn’t be who I am today, without you.

 

Pulling Back the Curtain On Living with a Panic Disorder

Selfie of Jeffrey VanDykeWritten By: Jeffrey Vandyke, Graphics Design Specialist

It’s time to pull back the curtain and expose a long kept secret…. I live with a severe Panic Disorder.

For many this comes as a shock…why?  You never expected to hear it, especially coming from me. That’s right, me… I live in a state of almost constant anxiety.  On the outside I’m someone who’s quick witted, I have a great sense of humor and I always try so hard to pick other’s up… sometimes to a fault.

However, what you don’t see most the time is what’s happening underneath all of that. See, when you live with an Anxiety Disorder the slightest shift can send one’s brain into overdrive. Maybe you missed a text, a change in plans, an unexpected test result, a misstep in your word choice, or worse… you feel like you hurt someone you love, so you compulsively apologize. Not just for something you did recently, but for something you did years ago that just so happens to sneak its way into your thoughts.

Because we’re all different, one scenario may send you over the edge, but not bother someone else. My personal landmines tend to vary by the day, but the ones listed above are and have been a constant for me. Fourteen years after my initial diagnosis, I still have no idea why these seemingly simplistic scenarios send my brain into an emotional tailspin. I know this all seems irrational, but my brain doesn’t discriminate… no matter the topic, person, or scenario, it can always find a way to twist even the smallest detail into the worst possible self-talk there is. From they love me to they hate me in the midst of a single conversation.

The good news is as time has gone by I’ve learned little coping mechanisms, which have helped me learn how to better manage my anxiety a great deal so it doesn’t dominate every aspect of my life as it used too. (Of course I still have bad days, but I’m doing better than I was generally). If my anxiety starts to run away with my thoughts, I’ve began trying to draw my emotions… sometimes it’s easier for me to visually depict what I feel rather than saying it. Other times I’ll turn on a favorite song and listen on repeat… not just because I love the music, but because I know what’s coming next and exercising just the slightest bit of control can help put my mind at ease… in otherwise uncontrollable situations. All in all, while this process certainly isn’t easy… not for myself or anyone else living with the same or similar condition(s) I keep reminding myself that everything in life worth having requires small but necessary steps in order to proceed. You can have a house, but you need to lay down a foundation first. You can run a mile, but you need to learn to walk first. You can have your dream job, but first you have to apply… on and on. Hopefully whatever goal you’re working toward becomes closer and closer each day. You might stumble along the way or get pushed back a bit, but you find the courage to keep going. The life you hope for might not be easily attainable, but with a little effort it is possible. You’re worth it!

The Michigan Victory Games

Picture of entire Wave Team attending the Victory Games

Selfie of Jeffrey VanDykeWritten by Jeffrey Vandyke, Graphics Design Specialist DNWM

Imagine a world where you feel like you never quite fit in, where you constantly feel judged and feel like an outsider because your body physically doesn’t match how you feel about yourself mentally. This was how I felt about myself or at least it was before I began participating in the Michigan Victory Games as a member of the Muskegon Waves.

Then I started attending the Victory Games three years ago, I was a bit shy and felt anxious in new environments and around strangers, but the Victory Games slowly helped me not only overcome this, but begin to thrive far beyond my wildest dreams. By attending the Games I began to learn not only what I could do athletically, but more importantly personally.

See, The Michigan Victory Games is so much more than about just playing sports. It gives athletes a safe place to try new things, a place to socialize, a place to compete and a place to grow outside of sports. It truly enriches lives and promotes change for those living with differences. The Victory Games presents athletes with a can-do environment where you’re not only presented with an opportunity to participate in various sports, but encouraged to try regardless of personal ability level. The events are Track & Field, Bocce, Bowling, Weightlifting, Table Tennis, Swimming, Biking, Slalom course, and a few others, along with a dance at the very end of the Games.

Overall, I know to some… this all may not seem like a big deal, but for me the experience as a Muskegon Waves athlete has been life-changing as I’ve  not only have become more confident in myself as an athlete, but more importantly as a person. It is my hope to continue to attend the Games for as long as I can as not only an athlete, but most of all as an example… I want those around me to know that if I can do this, so can you!

If you would like to learn more about the Victory Games or how you can get involved or participate, you can email me at [email protected] or call me directly at 231-332-4043.

Rep. LaFave mobilizes plan for updated accessibility logo

State Rep. Beau LaFave has introduced a plan to update the accessibility icon used on signs and in parking lots and buildings in Michigan, better reflecting the lifestyles of people with disabilities.

The legislation would require that any new placement or replacement of signs displaying the international symbol of access utilize the updated logo, which portrays active independence, rather than stationary helplessness. The new symbol would be replaced at no cost to taxpayers and no additional cost to business owners.

Michigan wouldn’t be the first to adopt the new icon. New York and Connecticut have already implemented similar legislation.

“The new logo shows that individuals with disabilities play an active role in the community and aren’t just sitting in a chair letting life pass them by,” said LaFave, of Iron Mountain. “It’s not about political correctness, it’s about showing the true relationship between people and the devices that assist them. It’s not 1968 anymore. It’s time to portray the new reality.

“As a person living an active life with a disability, I’m proud to stand on the front lines to instigate this important change.”

LaFave’s measure would also take steps to remove the term “handicapped” from signs and other communications at state and local levels.

The legislator worked closely with Disability Network Michigan to create the legislation. The group joined him at the Capitol today to advocate on behalf of the legislation. Scores of individuals with disabilities were in attendance to support the cause.

“Disability Network Michigan’s 15 federally-established Centers for Independent Living served 43,588 people with disabilities last year,” said Sara Grivetti, CEO of Disability Network Michigan. “We know that people with disabilities are active members of their communities. This legislation will help our signs reflect the reality.”

LaFave’s bill in the package is House Bill 4516. The second bill, HB 4517, was sponsored by state Rep. Greg VanWoerkom, of Norton Shores. The bills were co-sponsored by both Republicans and Democrats, including all Upper Peninsula representatives and the chair of the House Health Policy Committee.