2018, nearly 2019 and the Americans with Disabilities Act (ADA) was passed in 1990.  The move toward a more accessible world for people with disabilities has made some solid progress.  Public buildings are far from perfect, but miles from when the ADA was first enacted.  If you aren’t familiar with the ADA, a simple explanation is that the ADA provides guidelines meant to deliver standardization for places of public use.  Specific standards such as how high light switches should be placed, not just where grab bars should be placed; but how thick the bar should be and it’s distance from the wall, or how many accessible parking spaces should be painted outside along with the best approach to use.  No, not all of these will have a major impact on usage, but surely the primary function of the business should be accessible if the builders followed the law and checked the guidelines of the ADA. 

If the purpose of the ADA is to provide civil rights and make basic functions of an establishment as accessible as possible, then why are most hotel beds so high off the floor?!?  ADA suggests 20-23 inches from the floor to the top of the mattress.  I think I have encountered this same bed issue in nearly every hotel I’ve stayed since becoming paralyzed in 2005.  The thing is, I expect not to be able to get on the bed easily in any hotel room.  Even wheelchair accessible rooms that have a roll-in shower.  And that is not alright.  I know “accessible” will never be truly accessible for all, but maybe following the law and standards that have been around since 1990 would be a good place to start.  They aren’t hard to find www.ada.gov.

Unless I’m mistaken, it seems as though the height of a bed is pretty important to the overall function of a hotel.  What good is getting an “accessible” room even equipped with a roll-in shower when the user can’t get on the bed?  A MAIN FUNCTION OF A HOTEL!  Especially in a new hotel.  This one I’m referring to was built within the last year, and is a national chain.  They should know by now what is ADA acceptable and what is not up to the code. 

A new issue I encountered was as a result of the business trying to be more “Green”.  While good intentioned, made it difficult for me without having finger dexterity like a “typical” person.  This new feature worked the lights.  Once inside the hotel room, the occupant is supposed to slide a door key inside this slot and leave it there and the lights in the room will work as normal.  Remove the key, and the lights will turn off after a minute or so and flipping lights on no longer works until a key is placed back in the slot by the door.  So naturally what happens when I try to go to the bathroom at night?  I went to put my key in the slot by the front door, because bathroom light won’t turn on without it in there, and dropped the key to the floor.   Also note that the slot is not at a low and convenient location but above the light switches.  As a result I ended up using my phone’s flashlight and the TV as my only light sources.  Hindsight Tip: Leave the key there over night and my incident would've been avoided .  I applaud the initiative to try and be “Greener” or more “Accessible”, but seems like a little more fore thought and input from some of the people the changes would impact could have prevented this.

*The hotel bed I needed to raise my power chair up to transfer

 *The card key slot above the light switches and hotel key I dropped

 *Close up of card slot above light switch

 *Great roll-in shower, but don't think a seated person on the bench0 can reach the water controls or the soap dispensers

*Room thermostat placed in hard to reach spot

Different hotel, accessible room, same issue with the bed and Temperature control

No matter how beautiful you think the snow is, you can be sure that most people with disabilities prefer mild temperatures and light precipitation during the winter months. Probably the most important resource we have, our support systems, get stretched to the breaking point this time of year even under the mildest weather. Most of us realize how important you are to our continued independence and don’t want to go to the well too often to ask for help. 

Those of us that are from Michigan know that it is wise to keep the shovels handy and the snow blower gassed up and ready. It is only a matter of time before the white and ice arrive. It is important to remember that the City of Jackson residents are required to clear sidewalks to a minimum of 3 ft. in width adjacent to their property when more than four inches of snow accumulates. The ordinance also authorizes the city to remove snow and ice that is a threat to public safety at the property owner expense, sometimes without written or verbal warnings.

If a property owner is unable to clear their own driveway or sidewalk there are sometimes options including volunteers. It's important to let the city or your local municipality know when you have a problem. They can sometimes work out a solution or help you come up with a plan of action. In the city of Jackson you can call (517) 788-4170 or visit their website for more information www.cityofjackson.org. Call your local government to see if they have similar solutions to snow and ice issues for Seniors or those with disabilities.

City of Jackson Snow Removal Code at a Glance

• Persons living in or the owner of any home within the City limits shall clear ice and snow from sidewalks.
  
• The clearance ice and snow shall be at least 36 in wide and the entire length of the sidewalk in front of the owner’s home.
• Snow 4 in. deep or more shall be cleared from sidewalk within 24 hours after snowfall stops.
• Any amount of ice shall be cleared from sidewalk immediately after storm producing the ice has stopped.
• If ice or snow is not cleared from such sidewalk per City code the City will move snow or ice and charge the owner at least $35 or the actual cost of removal whichever is greater.

(Code 1977 & 4.47; ordinance number 2001.17 & 2, 8-14-01)

Just like trying to solve a Rubik’s Cube, daily life with a disability is about problem solving.  While the typical daily issues aren’t as complex as a Rubik’s Cube and after a time or two of the same obstacle, the problem/task becomes easier.   How you go about solving and working through problems are completely up to you.  Often through trial and error we can get to our end goal.  Just may not be in a time effective manner.  After enough time, problem encounters, and going through strategies a person with a disability practically has earned their Ph.D. in Adapting and Problem Solving.

First things first, patience is an underrated virtue.  Personally, as a Quad with no dexterity in my hands I encounter this on a nearly daily basis.  How will I “grab” something, open it, pick it up, hold it in my possession without dropping/spilling/breaking or opening it inadvertently?  That’s a big part of why I don’t have nice things.  I know I will drop anything in my possession, at some point, if I handle or hold something long enough, it’s going down.  However, losing your control and getting upset typically won’t aide in solving or adapting to a situation.  In fact, will often take you off track and leave you with anger over not getting what you wanted in the beginning. 

You will fail.  Everything is not going to go right for you. 

Take the time to step back and evaluate what you did.  Maybe a simple tweak here or there will give you what you wanted.  Maybe you need to take a completely new approach to find what works best for you.  What is good for others, may not be best for you.  Just like the way you do something may not work for other people. Creativity, willingness to try, and adaptability are important.  Getting advice or ideas from other people with similar disabilities is a great resource and honestly probably the best resource!  People that have been there and done that. Occupational Therapists are another resource, they love sharing or thinking of how to adapt equipment or know of where to look for assistance.  

The key is to not give up and keep trying.  If you want to do something bad enough, there is probably a way to do it.  Maybe a new perspective from a separate person is what is needed.  Whatever the reason, having the patience to consistently move forward and not throw in the towel or get so frustrated and quit are key to adaptation and life with a disability.  Through various experimenting a solution will come around for you.  If not, if all else fails, take the stickers off the Rubik’s Cube and put them where you want them.  That’s the only way I ever solved one of those things.  Sometimes a simple life-hack is all that is needed between you and obtaining your own Ph. D. in Adapting and Problem Solving.

Did you know that people with disabilities are much more likely to struggle with a dependency on substances because of preexisting conditions?  It is always a delicate balancing act between controlling pain and addiction.  Anyone can find themselves in the perfect storm like Duane after a recent back surgery.  It took some work to give up the pain pills, with the support of his wife Beth, Dog was able to shed the meds.  When you're arguably the most famous bounty hunter in the world; dealing with people caught in the grip of addiction is just part of the job.  Duane Chapman better known as Dog the Bounty Hunter and his beloved wife Beth, a recent cancer survivor, have made it their mission to make a difference.

Dog brought his message to the Michigan Theater in Jackson of never give up on anybody. There is always hope.  He asked the intimate gathering; “Do you know of people that need treatment?  If you do, get them to me and my friends and we will work to save their lives".

There's hardly a family out there that isn't affected by addiction and Dog and Beth's family is no exception.  Fourteen years ago on the eve of their wedding their daughter Barbara was killed in a car accident while under the influence.  After that terrible tragedy they searched for a program that actually worked and didn't cost an arm and a leg and ended up partnering with Treatment Partners of America.

About a hundred and twenty people were in attendance.  Dog said they did very little advertising of this event because he wanted to keep it small in hopes that they might not make anyone seeking help feel overwhelmed.  His voice cracked and the tears rolled down his face as he talked about how addiction has affected his life and the people around him.  A lot of people talk about the opioid crisis, but Dog and Beth are two people who are actively working towards solutions.  The veteran reality stars constantly give back and ultimately give thanks and credit for everything they do to their Christian faith.  If you or someone in your life needs help call 1-888-734-3175 or log on to www.treatmentpartnersofamerica.com

There are many words/emotions that people can feel after receiving new information or statistics. Emotions such as surprise, disgust, doubt, pride, anger, shock, fear, happiness, or awe are a few emotions we have all encountered … Often, those responses and words depend on the background of a person and their base thoughts, perceptions, knowledge, biases whether known or unknown, personal experience(s), or any number of other factors that can influence our response upon being presented with new statistics or information. Also, how this new info or stat is presented to us along with our interest level may impact our response. Clearly, there are numerous factors I just mentioned and probably many others not mentioned that help sculpt our decisions once presented with something new. 

         I brought all of that up, spoiler alert, because I want to share some information and statistics with you. Hopefully by bringing you aware of all those underlying factors you will take this in with an open mind and take a moment to process what I give you. As a person with a disability (I am a C-6 Quadriplegic of over 13 years), I’m an easy target to somebody that wants to commit a crime of some sort. Plain and simple, people with disabilities present opportunity to a predator. 

·       Bureau of Justice Statistics did an analysis from 2009-2015 of crimes against persons with disabilities, rate of violent victimization towards persons with disabilities were at least twice the age-adjusted rate for persons without disabilities

. https://www.npr.org/2018/01/08/570224090/the-sexual-assault-epidemic-no-one-talks-about

·       DOJ stats only count for ages 12+ and do not include institutions or the nearly 373,000 in group homes

·       People with intellectual disabilities are sexually assaulted at much higher numbers — "more than seven times higher than the rate for persons with no disabilities."

·       https://www.bjs.gov/content/pub/pdf/capd0915st_sum.pdf

Please be careful and aware of your surroundings along with looking out for those you love.  Conduct background checks along with use of references when possible, especially for an employee working with a person with multiple disabilities. People with multiple disabilities are at even a greater risk than somebody with one disability. If you are worried or concerned try and notice if there are signs of abuse or personal items lost. Victims may feel too ashamed or embarrassed to come forward initially. Voice your concerns early and to the appropriate personnel/authorities. With support, understanding, and simple belief in the person about their experiences, we will be able to move forward and put an end to these disgraceful acts against people with disabilities.

Written by: Holly Peterson

 

This has been a very big year for the Peterson Family.  My daughter Sally graduated from Lyle Torrant Center at age 26.  Many parents like myself feel that “the bottom falls out” of our adult child’s and our lives. All of the hours of time that were filled by school need to be filled with  activity!  That doesn't mean the activity of sitting in front of a television or a video game ..to us, it means QUALITY and MEANINGFUL activity! 

My husband Jeff and I look at each other and ask…”What will it look like...where will she go, who will do it with her”? We are both heavily involved in local issues for individuals with disabilities so we have made it our jobs to be informed...and for me, well it actually IS my job (to be informed)!  I work for disAbility Connections and contract to the Intermediate School District as the Resource Coordinator.

Because we both work, we have limited “staff hours” and need to make the most of them.  We don't have the time to invent things...so we need to rely on what is currently happening in our community and plug into those things.   We take Sally’s interests, her strengths, physical abilities and needs into account, then add the important things to our family, like faith, volunteering and giving back to the community.  Our family motto is…”If it is to be (it might be) up to me!” 

I have gathered a list of community activities over the years that I share with other families and today I am using it like my menu.  I am checking off the things we will participate in and add others  (that’s the “up to me” part).   I will set it up like a weekly calendar. It doesn't have to be stuck like glue, but if it is on paper it is more important to us, to Sally and to helpers in making sure we attempt to meet the goals we feel are important to the Meaningful life we hope to foster.

Monday:

AM—David’s Promise at First Church of the Nazarene

Home for lunch

Laundry Day (Sally assist with sorting and folding -hand over hand)

Light clean and pick up in her bedroom, bathroom and family room.

Bike Ride or walk.

Dinner and Relax with TV

Tuesday:

Water /Shaving Cream Play / or bake something (to take to friends at library and our favorite waitress’)

Relax and Lunch at home

Library visit (volunteer and clean book jackets in children’s department—take your own Clorox wipes– hand over hand assistance needed)

Return and pick new  - library books  / Alternate weeks with ACTION CLUB

Taco Tuesday  Dinner at Bone Island

Wednesday:

AM– David’s Promise

Out to Lunch with a friend from David's Promise at Alpha Coney

Go to the mall with an agenda...that could be  smell lots of things like candles, lotions etc or find all things furry and touch them!

Check checking account balances, gas in car and car service needs.

Home to relax—fingernail and toenail polish touchup!

Thursday:

Therapy  (walk, bike ride or music etc)

Grocery store, home and put away

Pick up lunch to take home or eat out

Clean Bath, bedroom and family room (hand over hand assist)

Laundry

Friday:

YMCA to Swim (shower)

Bake and package  (something to take to your friends!)

Meet Friends for Dinner or 2 for 1 appetizers at Applebee’s

Attend a sporting event  BB at High School or Soccer at SAU or 1 time a month  go to Civitan Dance 

Saturday:

Plan to do something in town, a concert, play,  festival etc.

Go to park to swing, walk and have ice cream

Hang at home watch TV movie.

Sunday:

Church

Lunch out or at church

Hang with Family!

 

It is so important  for us to have  the “regular places”  that we visit. 

We can strengthen our circle of friends. EX:   Sally goes to the library every Tuesday and sees her friends Mary and June who work there. She cleans book jackets to volunteer. Mary and June talk to her, ask about her week and become her friends.  Sally goes to Taco Tuesday at Bone Island Grill - as do lots of other people - who after time, are stopping by to say hello to her. Her favorite    waitress expects to see them.  She tells her family about Sally, soon people are stopping her at the mall and store to say “hi” to her. 

We have met new friends at sporting events or festivals that have eventually become a part of our caregiver team.  Especially              students– they see Sally out and want to be a part of doing that with her.   One time we went to a graduation event at Spring Arbor University and no fewer than 12 kids came to see her and talk to her… I only knew 2 of them—they all knew Sally! 

Her community is broadening daily, and we are building a “new bottom (foundation)” to the one we thought would “fall out”!

 

By: Brian Elliott

Time.  Time is a funny thing.  A second now is the same as a second tomorrow, yesterday, in the future, or year’s back.  Same can be said for hours, years, decades, centuries, etc.  Time will not slowdown nor speed up, and no matter how much we plead we cannot stop or go back in time.  All of us have something we wish we could go back and do-over or undo in our lives, probably several in fact.  We don’t get the luxury of going back for re-do’s in our lives, no matter what happened time will go forward.  Time never stops.  Not for one second.  One thing is for certain as time keeps moving, there are lessons that can be learned.  Some lessons only take once while others take longer to learn, hence “Should’ve learned the first time”.   That is the catch.  How do we know what the lessons are and what do we do with these lessons?  I think we should share them.  No matter how big or small.  A little extra education never hurts and it is these life lessons that will make an impact.

As parents and schools are about to release the young out into the wild for a few months there will undoubtedly be lessons to learn and share. Sometimes there is nothing that can be done to ward off bad outcomes, no matter how much prep, precautions, and skill are involved. Unfortunately this is life and we don't always get what we want. I know that I never wanted to become a quadriplegic. Honestly never even crossed my mind as a possibility, didn't even know what it meant. Let alone, that it would be the result of my own actions and from such an ordinary and innocent activity. I was just going to hang out with my friends after work. "See you later Dad, be back sometime later tonight". How was I to know I wouldn't and couldn't go home again for months?

July 27^th or 28^th, 2005 I began working on some of those lessons.  I say the 27^th or 28^th because I honestly didn’t know what day it was, or even where I was. Only things I knew were that I couldn’t speak loud enough to be heard and I couldn’t turn to look over and see my family sitting beside me.  The last day I almost fully remembered was Friday, July 20^th and I was hanging out with three of my friends on a pontoon boat having a few drinks before heading back to a party in Tecumseh.  Now I was laying on a hospital bed and couldn’t speak because I had a tube down my throat.  I couldn’t even turn my head because I had a cervical spine brace aka “Halo” on.  Not to mention that I couldn’t move my legs, arms, or torso.  In fact, I could no longer feel any of those parts of my body if someone touched me.  Sometime during that Friday evening July 20th, 2005 I took my last steps.  Even though I don’t remember it, I know those last steps were right before I dove off of the pontoon boat.  Right before I hit my head on the lake bottom, crushing cervical vertebrae and severing my spinal cord in my neck.  From that moment July 20^th until the 27/28^th I still only have flashes of memory, a few moments of time here and there.  Time had basically disappeared for me.  However, it steadily ticked for all those around me and the lessons were stacking up.  

Immediately after and in the time since, there have been many lessons that can be taken away from my experience and I am passing just one very simple lesson on to you.  A lesson I have shared with others and will continue to share.  However, I ask in return you remember my story, my lesson, and share it with people.  Here is the lesson, plain and simple.  Think First, Feet First.  I want that to sink in, just like I sank in the water before being pulled up off the bottom.  Think First, Feet First.  Anytime you or others enter any body of water for the first time.  Please, please, please enter the water with your feet first instead of diving.  Yes that means even jumping off of your own docks, boats, swings, etc. in places you have been all your life. Lake bottoms shift and change with tides, tree limbs and logs float around lurking under the surface.  If the worst that happens is that somebody breaks an ankle, I’ll take it.  Trust me you’ll be thankful when considering the alternatives that could have happened. 

We never know what the future has in store for us. Especially any younger people out there. You aren't as invincible and indestructible as you think/feel. Trust me.  Think First, Feet First!  As a reference, the human spinal cord has a consistency similar to Jell-O.  That is how sensitive your body's information highway is, doesn't take much to nic or damage something as delicate as Jell-O.  Spinal Cord Injury (SCI) Information Pages reports there are at least 11,000 new SCI’s each year and 82% of those are to males.  Ages 16-30 are the highest per capita for SCI, where about 56% of SCI occur.  I fell into each of those stats, I was a 20 year old guy when I had my diving accident.  During my 3+ months of inpatient rehab at U of M in 2005 there were six people with SCI’s.  5 male and 1 female, out of the 5 males, 4 of us were in our 20’s and all 4 of our SCI’s were a result of shallow water.  Statistics don’t lie and time waits for no one.  Make the best of your time and the lessons that come along the way.  While you get ready for summer activities, please remember and take my lesson:  Think First, Feet First!

 

Michigan to Celebrate 25^th Anniversary of the American with Disabilities Act

Dynamic Abilities Blog 4-15 By: Parrish L. Stahl

The ADA is nearing its 25^th birthday.  It was signed by President George H.W. Bush on July 26, 1990.  It is largely a civil rights law that prohibits discrimination on the basis of physical or mental disability; similar in some aspects to the Civil Rights Law of 1964, which made discrimination based on race, religion, sex, national origin, and other characteristics illegal.  It specifically addresses accessibility requirements of public accommodations and reasonable accommodations in employment.

Nationwide and state celebrations are planned this summer. There is a major event happening at the Lansing, Michigan State Capital steps slated for September 17, 2015. The public is invited.  It is undeniable that the Americans with Disabilities Act of 1990 changed lives. 

The Department of Justice has announced that people who wish to file ADA complaints can now do that completely electronically.  The person needs to visit www.ADA.gov to fill out the new electronic form.  After the complaint is received the complainant gets a reference number that is then used to track action on the submission. 

After March 15, 2015 e-mail complaints are no longer accepted.  People are still able to handle the process through traditional United States Mail by calling the ADA Information Line at: 1-800-514-0301 (V) 1-800-514-0383 (TTY) and requesting a paper form.

It would be interesting to hear your comments on how it has impacted your life or someone you love. In your opinion, what do you see as the ADA’s successes or failures?   Where is there more work to do regarding accessibility both locally and nationwide? For this author, it is frustrating that we have gotten things like pool lifts at public pools and the equipment often sits unused either due to lack of use or knowledge on how to run them.   For any civil rights legislation to maintain lasting change our voices must continue to advocate and be heard.

 

Temporary Obstacles Can be as Frustrating as Permanent Ones

By: Parrish L. Stahl

Holidays and crowds are part of life, especially at Christmas time, but do you realize how often the bell ringer and their bucket or that service clubs nut sales display park themselves in the middle of an access isle? But it is only temporary, Right?  Think about it every month presents special occasions that make life and mobility hard for those of us that need accessibility.  As soon as late January those Valentine’s Day displays go up in retail stores.  For a person using a mobility device, it means far too often, that isles that were beautifully designed to incorporate accessibility are invaded by temporary holiday displays.  It is usually only a few inches and when questioned well-meaning workers say, “it is only temporary”. 

The problem is March is St. Patrick’s Day, then Easter, Memorial Day, Mother’s & Father’s Day and those fireworks on every checkout celebrating Independence Day.   Oh, and then Labor Day and the big back to school push that fills end caps and isles with backpacks and cardboard boxes full of notebook paper and other supplies.  Finally, Halloween rings in fall with ghosts and monsters everywhere with literally tons of extra sweets crowding isles. 

It is much easier to accept that an eighty year old building has steps and is inaccessible than it is to know an access route is being blocked by a shopping cart because that is a convenient spot for a cashier to put returns.  Her explanation, “it is only temporary, until I find time to put these returns back”.  Recently at a craft show a portable ATM was parked in the middle of a sidewalk only for the day.  When a picture was shared with the financial institution they made a commitment to not let this happen again.  

Does anyone else have a hard time smiling and asking that things be moved?  Why am I so often embarrassed because I need to move something that after all, is only temporary? One could argue, so is the motorcycle parked in my access isle, the choir risers set up in circulation space, the garbage can that traps me in a bathroom, the pallets, of salt, mulch and soil and other items that change with the seasons, like bicycles, garden tractors and swing sets.   Does it make these obstacles any less of a problem because they change?  Education and the public’s understanding is the key to real change.

Striving Toward Accessibly for All Means People Need to be Seen & Heard

By: Parrish L. Stahl

Recently disAbility Connections launched the “Striving towards Access for All” project.  The first ever recognition was given to the newly renovated Meijer Branch of the Jackson District Library.  It is beautiful in its architecture and simplistic approach to accessibility.  The design is a testament to how seamless accessibility can be incorporated when included in an initial design.  In fact, the facility received a perfect score on the four priorities spelled out by the project, which are:  Parking and Approach, Entrance, Circulation and/or Seating & Restroom.  Perfect scores won’t be common.  Our world is full of obstacles and barriers, but does anyone else want to focus on the positive side of accessibility as we approach the 25^th anniversary of the Americans with Disabilities Act?

There are places in this community and others that won’t be accessible for years, if ever.  The answer is public pressure and positive voices.  If an entity is not accessible, should not someone ask why?  Polite phone calls and letters often can be powerful.  Does not it make sense to engage businesses and organizations in a dialog as opposed to threatening legal action?  Often changes happen because someone had the good sense to point out a problem in a reasonable way.   Michigan has natural wonders that are in our back yard; public access lake docks and parks are all around and have a long ways to go to be accessible.   Some areas like, Michigan Center, the Irish Hills and the City of Jackson have made strides, but if you love the natural world in the City or outlying communities your voice and actions is the quickest avenue to change.

One of the simplest, easiest ways you can increase accessibility in any community is to be seen and heard when using accessibility features that already exist;  meaning if you or a family member appreciates something tell a manager in writing if possible.  Just a short thank you note often is extremely powerful.   Another important action is to use what is there.  If a swimming pool has a lift for example, use it!  Often things like pool lifts sit unused and thus are not priorities for overworked staff.   The more people that use and request accessibility design elements the more indispensable they become to the whole community.  Will not real change happen when entities realize the positive economic impact of being accessible?