kc bob: ACCESSIBLE

Showing posts with label ACCESSIBLE. Show all posts

please do not #prayerbomb my friends

I loved reading this message from my friend Letiah on Facebook. She is a member of the clergy with the Church of the Nazarene. Letiah uses crutches to get around.

Letiah @ Young Clergy Network

My first time here. I was prayer-bombed today because I'm crippled. I did not fight it. I chose to endure the spiritual abuse because I knew it would make him leave faster. I was right. Prayer & go. Didn't even take the time to get to know me at all.

I'm surrounded by Christians who see me as a project right now. I just came to visit the new local coffee shop in my neighborhood. Perhaps if I was viewed as a human the quickie prayer might have focused on something else. I am not angry. This has happened too often in my life for anger to take up space about this. I am just naming the ignorance and ableism that is obviously present in our world and its systems.

Sadly, this is continued evidence that this narrative is widely lived into in the church. Why do people with disabilities widely refuse to attend church? Why do we have issues with our bodies and being? I would suggest because we don't like feeling like projects.

I would also suggest that many of us have accepted and even like the way our disabled bodies bear the image of God in our world. We are NOT here on earth to provide a source of inspiration or to be fixed. Our humanity has been blessed since the very beginning.

We are very good....crutches... and all.

Rant over.

BTW. The iced chocolate Chai is delicious and I'm still crippled. Just in case you were wondering.

Being in a wheelchair and disabled, my wife Ann has had similar experiences of being prayer-bombed because of her disability. I think that the problem with #prayerbombing is a confluence of bad theology and bad manners. I have often said that folks wanting to #prayerbomb Ann should be asking her to pray for them.

Like Letiah, Ann responds with beautiful grace to #prayerbombers. Hats off to Letiah and Ann for the grace and strength they display to us every single day.

So please try not to #prayerbomb my friends. Instead, ask them to pray for you.

Rolling on the River

Loving my vacation on the San Antonio Riverwalk. I have enjoyed the riverside restaurants and walking by the water. If you are interested in leaning more about the restaurants there, please check out my reviews at Tripadvisor [here].

That said, the time has been a bit challenging with my wife is in a motorized wheelchair. We really enjoyed our multi day visit to the riverwalk area but feel that it could be a lot friendlier to people in wheelchairs. A few thoughts:

Many unlit areas make it difficult to navigate the walk at night.
Narrow passages are a bit dicey for a disabled person.
Many pathways are without curbs. This makes for tense traveling in a motorized wheelchair. Concerns about going into a ditch or, worse yet, into the river are a reality for a disabled person.
Some elevators, especially at the street level, are unmarked and hard to find.
We visited in a slow time and the Riverwalk attendance was fairly low. I do wonder what it would be like for a person in a wheelchair if attendance was high. Seems like it might not be a great experience.
A person in a wheelchair would do well to carefully plan their time on the Riverwalk. Once on the Walk it is very difficult to travel to the other side of the river as all bridges have steps. To make the trip you need to elevate to the street then crossover and find another elevator. Not as easy as you might think.

In addition to these points, we could not find a good map of the riverwalk that listed attractions and restaurants. It was good, however, that the broken elevator was clearly identified on the map we got from our hotel.

Finally, on the positive side, most of the riverside restaurants were easy for a wheelchair to access. And the area is really beautiful and a great place to kick back and relax. I recommend it to you if you are looking for a place to relax.

What not to say to a Person in a Wheelchair

Thought I would repost this as I have been in a wheelchair since I fell and fractured my pelvis a week ago.

From Tiffany Carlson at the Mobility Resource ...

Spend a week or a decade in a wheelchair, chances are you’ll be asked some pretty crazy things. And I get why –people are uncomfortable around things that are different, especially wheelchairs. ... If you don’t want to make a fool of yourself the next time you’re around a wheelchair-user, read on for the top ten things to never dare say or ask to a wheelchair-user.

Slow down there. You might get a speeding ticket.

What happened to you?

How fast does that thing go?

Do you know so and so in a wheelchair too?

Is your significant other also in a wheelchair?

I’d rather die than be disabled.

You’re good looking for being in a wheelchair.

Good for you.

Can I ask you a personal question?

Hey speed racer. Can you pop a wheelie?

If only more people remembered we are still human with normal functioning brains (I know, hard to believe), then a list like this wouldn’t be so necessary.

Read the rationale behind Tiffany's list here.

-originally post September 30, 2013

Caregiving vs Caretaking

I am a caregiver for my wife. I help her doing things that are a bit of a challenge for a person in a wheelchair.
So my interest was peaked when I saw an article titled "When Care Becomes Overcare". A few clips from it:

On occasion our care and compassion can leave us feeling drained and stressed. Emergency relief workers will tell you that compassion fatigue is very real – it takes practice to care for people without becoming overly identified with their challenges.

The energy drain and depletion we sometimes feel can happen as a result of being out of balance with our care. Sometimes our care can cross a line and turns into worry, anxiety and stress. In other words, our care and compassion start to drain our energy and becomes what is called “overcare.” [You can read the article in full here.]

I can relate to overcare and compassion fatigue. Ann and I have talked about this a lot. We agree that being a caregiver is not the same as being a caretaker. One controls, and is responsible for, the care of another and the other merely assists in it. Ann mostly cares for herself and, in reality, she often takes care of me more than I take care of her. ツ

Now I Have MS

My wife Ann shared this with me saying how much she relates to the feelings expressed in it.
The disease that Ann suffers from is very similar to MS.

I used to be a writer and an artist. Now it’s hard to hold a pencil. Now I have MS.
I used to be a great conversationalist. Now I can’t find the words. Now I have MS.
I used to be energetic. Now I’m tired. Now I have MS.
I used to feel rested and refreshed and revitalized. Now I don’t sleep. Now I have MS.

People think I don’t listen to them. I do—I just don’t remember. Now I have MS.

I used to be a violinist. Now my left side is too weak. Now I have MS.
I used to be fearless, when things were more predictable. Now I’m afraid. Now I have MS.
I used to be in control of my emotions. Now my emotions control me. Now I have MS.
I used to make plans and look forward to those plans. Now I don’t know how I’ll be feeling. Now I have MS.

It took a lifetime for me to “find myself.” Now I live with a foreign brain. Now I have MS.

When I used to get sick I knew exactly what I had and how long it would last. Now I have MS.
In 2011, I followed my dream when I fell in love. I was finally excited about my future. In 2012, I found out I have MS.
Now I don’t know what the future holds for me. Now I have MS.
I always gave my best. I still do, but my “new best” is my new normal, not what it used to be. Now I have MS.

I’m still a wonderful person with a good heart. People still see my beauty within.
Now I have MS, but I am not nor will I ever be MS.

Written by Dana Harrison from Mentone, Indiana. Read more here.

The Note on Justine's Car

To person that left this on my car last week at Mitcham Shopping Centre - I was diagnosed with Multiple Sclerosis when I was 35. Not just MS but the worst one that never goes away and is slowly crippling my life. My kids have had to deal with things that kids shouldn't ever have to deal with and all of our futures are forever changed. On the day you saw me I was having a good day, I was walking with my daughter unaided having a nice day. Thank you for ruining that. You made me feel like people were looking at me, the exact way I feel when I can't walk properly. I am sick of people like yourself abusing me on my good days for using a facility I am entitled to. A disability doesn't always mean a person has to be wheelchair bound but lucky for you I one day will be. Right now my focus is to walk into my best friends wedding next September and not have to be pushed. I will be 42. Before you ruin another persons day remember you don't know everything and just because you can't see it it doesn't mean a person isn't struggling to put one foot in front of the other.

-shared on Facebook by Justine Van Den Borne

What It’s Really Like To Be Chronically Ill

The worst part about being chronically sick isn’t the physical pain, it’s the emotional pain that goes along with it. You reach a point where you can’t hold back the tears any longer and suddenly you’re breaking down in the middle of a doctor’s office. You think you can escape the emotional torture; your disease is purely physical, right?

The worst part is that there is no escape. There is no light at the end of the tunnel. There is no happy ending. There is no way to make the incurable go away. We learn to tolerate the physical pain. You have to. But it’s the overwhelming emotional burden that makes you feel like someone is holding your head down in the water. You can fight it, but you can never overcome that crushing feeling. How are you supposed to get rid of an emotional suffocation when the source of it is never going to go away?

Being sick is being stuck in the eternal clutch of the unknown. Any day anything could go wrong, or at least more wrong than it already has. It’s so hard not to feel anxious or depressed or completely lost when all that lies ahead is a giant question mark. You rarely seem to get answers when you are sick. And when you do, they’re often the answers you wish you hadn’t heard any way.

There’s one thing every single sick person wishes for, but rarely gets. Hope. Hope that one day things will get better. Hope that there will finally be a day when your pain is a zero on that silly little scale. Hope that one day you’ll get a glimpse of normal."

Excerpted from an article by Lauren Anne. Read more at thoughtcatalog.com.

I like this new Image

A small tweak to an old image can make all of the difference. Such is the case with this new wheelchair image that you may (eventually) find posted around your neighborhood.

I like it because it symbolizes the energy and strength of those (like my wife Ann) who are blessed to be able to navigate this great earth in their wheeled chairs. I am amazed every day by the way that Ann roams around the city visiting the library, market and restaurants.

What do you think about the new image? Do you think it is a better representation?

Wheelchair Kid Talk

A few excerpts from 10 Things Every Parent Should Teach Their Kids About Disabilities ...

"When it comes to staring, kids get a “Get of Jail Free” card."

"The world is full of people who are different."

"Letting them know we can do many things on our own is a huge lesson for kids."

"Our chairs aren’t glued to our butts."

"Our wheelchairs aren’t oversized strollers."

"Fear, shame or embarrassment is not what you want your kids to feel in the presence of disability."

"Drive home the notion of a wheelchair as being an empowering object, not one that symbolizes helplessness."

"Feeling nervous, awkward or afraid around people with disabilities will only make your kids feel the same way."

"While some of us do have some awful chronic pain, letting your kids know a disability doesn’t necessarily equate to physical pain can take a definite load off their mind."

"My 6-year-old niece is a great example. She’s still too young to understand the concept of a spinal cord injury, so I just tell her my legs just don’t listen to me anymore, and she understand it completely."

So much has been taken away ...

My friend Carla shared this on her blog a while back and has given me permission to share it here. I offer it to give you a glimpse not only into Carla's life but to the world that my wife Ann and I sometimes live in as well.

I have been sad, I despise needing help / assistance from anyone, especially my husband. I feel like a burden, I have little to no independence, & I am so over living in a 3 level house in which I have access to only 1 level. I have boycotted please & thank you from my vocabulary with my husband as he loved to remind me when I didn't say it. I can't stand when I have to ask for anything I need that I cannot reach, or is on a different floor, or even in a different vicinity (needing the van) it's as though the task is being recorded so it can come back at me as if I don't appreciate anything that is done for me - this is never pleasant because it always occurs when I am experiencing a bad day physically & am already ornery.

I am learning that caregiving is not for everyone, we were blindsided & this ordeal has been quite a lesson learned, our personalities have changed & the meaning behind the marriage vow "In sickness & in health" does not have to be performed out of love but by duty, you just never know what to expect & no one is at blame & I know my duty is to be grateful that the duties have been met.

This is a very difficult way to live! I have been sad, unmotivated, lonely even in my own home, I am kept from so much and the punishment continues because why? Oh right, I am wheelchair bound. Dang it, it's not my fault, I didn't ask for this to happen to me but I would sure appreciate encouragement verses ridicule.

I want to walk, to be able to go upstairs to my art studio & create & be amongst my Wizard of Oz collection, to go down stairs & do my own laundry, to be able to reach anything in the kitchen cabinets, go outside & cut the grass or work in the garden, visit my family & friends by myself or with someone, or go on a (walk) with my husband. So much has been taken away from me, things that made me "me" & now I have so little to replace what was taken & I struggle to pull myself up by my bootstraps & find a new way, I certainly can't rely of any sense of encouragement at home so I have to dig deep within myself, this too will pass.

I have faith, & through Christ all things are possible , so no more pity party but it has been beneficial for me to enter this into this blog / my journal so I can remember my struggles & how I got through them.

Rolls-Royce Pickups and Showers with Hammocks

On the rare occasion when we travel these days we often don't look for the amenities offered in hotels like the ones above. Mostly we look for things like roll-in showers and other accessible features. What amenities might attract you to stay at a hotel? Would a hammock in the shower lure you to a hotel in Mexico or a butler button to one in India?

Celebrating Jon Will

If you want a life-affirming message on this Mother's Day I suggest that you read George Will's story about his son Jon who turned 40 this past week. There is so much inspiration in this story about a baby born with Down's Syndrome. I will skip George's insightful and compelling commentary on genetic testing and how 90% of unborn Down's babies are aborted and go to the last few paragraphs of his article ...

Judging by Jon, the world would be improved by more people with Down syndrome, who are quite nice, as humans go. It is said we are all born brave, trusting and greedy, and remain greedy. People with Down syndrome must remain brave in order to navigate society’s complexities. They have no choice but to be trusting because, with limited understanding, and limited abilities to communicate misunderstanding, they, like Blanche DuBois in “A Streetcar Named Desire,” always depend on the kindness of strangers. Judging by Jon’s experience, they almost always receive it.

Two things that have enhanced Jon’s life are the Washington subway system, which opened in 1976, and the Washington Nationals baseball team, which arrived in 2005. He navigates the subway expertly, riding it to the Nationals ballpark, where he enters the clubhouse a few hours before game time and does a chore or two. The players, who have climbed to the pinnacle of a steep athletic pyramid, know that although hard work got them there, they have extraordinary aptitudes because they are winners of life’s lottery. Major leaguers, all of whom understand what it is to be gifted, have been uniformly and extraordinarily welcoming to Jon, who is not. Except he is, in a way. He has the gift of serenity, in this sense:

The eldest of four siblings, he has seen two brothers and a sister surpass him in size, and acquire cars and college educations. He, however, with an underdeveloped entitlement mentality, has been equable about life’s sometimes careless allocation of equity. Perhaps this is partly because, given the nature of Down syndrome, neither he nor his parents have any tormenting sense of what might have been. Down syndrome did not alter the trajectory of his life; Jon was Jon from conception on.

This year Jon will spend his birthday where every year he spends 81 spring, summer and autumn days and evenings, at Nationals Park, in his seat behind the home team’s dugout. The Phillies will be in town, and Jon will be wishing them ruination, just another man, beer in hand, among equals in the republic of baseball.

Dumb Wheelchair Ramps!

This morning I spent a few minutes trying to share with a new friend what it is like living life with the limitations imposed by a wheelchair. I felt like I was not communicating what it was like very well at all. Perhaps it is something that you have to be involved with on a day to day basis to really understand. Or maybe I need to work on my story. :)

That said, I do think that this image of a wheelchair ramp dead ending into a column tells a bit of a story. You can see more dumb wheelchair ramps here.

The Benefits of Tongue Piercing

This may not be the post you think it is.. especially if you are wanting me to comment on piercings or body art. If you have never imagined that anything good could come of such things I refer you to a GeekoSystem post titled Tongue Piercing Used To Control Wheelchair. The piece caught my attention because of its reference to the Rehabilitation Institute of Chicago (RIC) where my wife recently stayed. Here is a clip from the piece:

The tongue is a strong muscle that plays a role in our ability to speak and digest (and taste) food. But for paralyzed individuals, the tongue could also be the key to gaining some mobility. Researchers at Northwestern University, the Rehabilitation Institute of Chicago, and the Shepherd Center in Atlanta have launched a clinical trial of a tongue drive system for wheelchairs.

The system is based on first piercing users’ tongues with a magnetic stud. A headset with sensors that can read the magnetic signals emitted from the piercing is worn by the user, who moves their tongue to signal the desired movements of their wheelchair. For example, pointing the tongue to the upper left corner of the mouth will signal the wheelchair to move forward.

I don't know about you but this kind of creativity, innovation and science wows me. Seeing so many disabled people at the RIC this past month (Ann shared a room with several) causes me to pray harder for innovations such as this one. If you are interested in learning more you can read the rest of the interesting GeekoSystem article here.

Casey's Cookies

Saw this on the news this morning.

The mission of Casey's Cookies is to promote independence and improve the quality of life for developmentally and physically disabled adults through training and employment, and to develop a residential community in the Tampa Bay area where Casey's Cookies employees can live and work in a safe and nurturing environment.

Check them out caseyscookies.org.

ADA: Blessed Legislation

People in wheelchairs form the letters ADA in commemoration of the
20th anniversary of the passing of the Americans With Disabilities Act
as Dodger Stadium sits in the background, Sunday, July 25, 2010,
in Los Angeles. They later set a Guinness World Record for the
highest number of people in wheelchairs moving in a line.

Today marks the 20th anniversary of the Americans with Disabilities Act. It is hard to really communicate the impact of this wonderful legislation.. difficult because it is so very hard to see the world through the eyes of a disabled person. My first wife Ellen, who was blind for three years, put it this way - you can wear a blind fold for a week and you cannot really understand what it means to be blind because you know in your mind that the blindfold will eventually come off and you will see again. Not so for a blind person.

This month marks also marks the beginning of the fourth year of my wife Ann's disability. Three years ago she began a series of three neurological episodes that left her with a wheelchair disability. Each day Ann continues to amaze me with a resolve that humbles me and an attitude that wows me.

Life in a wheelchair is very difficult. But it would be so very much more difficult if it were not for the accessible bathrooms, mandated curb cuts and many other provisions of the Americans with Disabilities Act. Our nation is blessed to have a government that rose up to help disabled persons.

Not so Wheelchair Friendly

This morning Ann and I were talking and she mentioned that it had been almost four years since she has driven on the highway and three years since she has been behind the wheel of a car. Life getting around in a motorized wheelchair has certainly been an eye-opening experience for the both of us.

Our conversation got me to thinking about our journey these past three years. One of the things that I ponder is how different my thinking is these days about the word "accessible" - especially when it pertains to the wheelchair variety. Here are a few things that I have learned along the way:

Handicapped Parking: Generally speaking parking lots have marked off parking for people in walkers. Most parking spaces designated with the wheelchair image cannot handle a van with a ramp and if there is one it is generally occupied by a sedan. Sometimes cars are parked in the striped areas making it impossible for a van to use.
Sidewalks: The Americans with Disabilities Act of the early 90s has greatly improved the ability of a person in a wheelchair to use sidewalks. Even so my wife has to use the street, in her chair, to get to the grocery store which is a few short blocks away.
Restaurants: Ann has developed an amazing phone interview process for these places. The initial response is almost always "Yes, We are accessible!" After a few questions (like "Do you have grab bars in the restrooms?") Ann will sometimes discover that the place is not wheelchair friendly. And strangely enough, even hospital restrooms are not always accessible.
Realtors: We have been considering a move for some time to make living a bit more accessible for Ann. Most home search websites like realtor.com have a wheelchair accessible category but the homes that show up usually are not accessible. Might have a grab bar in the tub but a wheelchair could not navigate their.
Traveling: Another difficulty for us. Plane travel is really not an option. Traveling long distances in our van is not easy so we generally don't do much of it.
Ignorance: Even in this age of enlightenment concerning disability I find that people can still talk down to people in wheelchairs. My wife is a brilliant person with a long resume of amazing work accomplishments but some still treat her like she has a mental impairment. Granted it is rare. And maybe I am overly sensitive.

I will probably think of a few other things as soon as I post. Check the comments for more. And consider this a PSA. ツ

Spooky eBay Transaction

Most of this month has been spent looking to replace my SUV with a wheelchair accessible van.. sigh.

Anywho, last week we thought that we found the right Toyota van for the right price on eBay. We spent several days asking questions and zeroed in on it last Wednesday night and entered the Buy It Now deposit on Paypal only to be rejected 5 times in a row.. never had that happen before.. quite frustrating.. as Ann rolled off to the bedroom a thought crossed my mind.. maybe I should re-read the eBay write-up. Yeah.. you guessed it.. the van had been in an accident.. neither of us caught it the first (and several times after) that we read it.

Of course we took the Paypal glitch as a sign of sorts and didn't buy the Toyota. Bought a Honda (see picture) on Friday from an out of state dealer.. they happened to be having a year-end clearance and dropped their price several thousand dollars from the price we had discussed the week before. An early Christmas blessing.. I love it when that happens.

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