Fresh Perspectives

More Misconceptions

When speaking about people with disabilities, I often hear people talk about "they" supplying things for PWD.  "They help people pay for the lift in their van" or "they help pay for assistive devices and designs" or "they help pay for wheelchairs".

I'll let you in on a little secret.  THERE IS NO THEY!  For me, independent transportation is a large financial burden.  I don't have roll-under sinks and universally designed cabinets in my home.  I can't afford it!  There is lots of adaptive equipment out there which I simply cannot afford.  There are many dis-incentives for PWD who want to work, and staying in the workforce can be a daunting task.

Example...When I get a new wheelchair, I absolutely need adaptive seating that raises the seat height in order that I can safely make lateral transfers.  Health insurance does not cover such adaptive devices; they are considered luxury items!  So I pay almost $1,000 for such adaptives.  The lift in my van requires maintenance and very expensive service.

So people with disabilities face large financial burdens.  There is help out there, but most is on a sliding scale based on income, not on family size or financial burdens already in place. 

Bottom line is this; being disabled is expensive!

Misconceptions

How many times has this happened to you?  You’re apprehensive about an event that lies ahead, something which you have never before experienced.  As the day gets closer, your apprehension rises.  You have difficulty concentrating on anything but your fear and anxiety.  Then the day comes, the event happens, and it goes much better than you anticipated.  You look back and wonder what you were so apprehensive about! 

These initial apprehension come from an intrinsic natural human reaction; fear of the unknown.

Today, I’d like to focus on a few reasons some tend to shy away from a people with disabilities (PWD).  As a disabled person myself, the reaction is something I notice.  My method of handling with this reaction is to deal with the people in a relaxed fashion.  When people realize that I share their innate humanity, their entire demeanor changes.

So I believe 2 related human reactions play a role in the way people view PWD:  1) Fear of the unknown and 2) vulnerability.  People may look at me and say “that really could happen to me”, and human reaction to the emotion involved with vulnerability is to withdraw.  The truth is this, my friends; you are indeed vulnerable; as humans, we all are!  The common bond that brings us together?  Our humanity.  With humanity comes imperfection.

As with many things in life, the unknown creates apprehension and results in misconceptions. Here are a few:

1. “Oh, you work?”  Yes I do, as do many PWD.  The percentage of PWD who don’t work is higher than among the non-disabled population.  Since the types of jobs PWD can do may be limited, it is more difficult for disabled persons to find jobs.  The fact that I use an electric wheelchair limits applicable jobs categories to non-physical work; not true for non-disabled people.  There are also a great deal of misconceptions and stereotypes about PWD that adds to this statistic.
2. “Oh, you drive too?”  Again, yes, but not true for all PWD.  Just like in everything else, each individual is different.  Having my own transportation is doable, but costly.  Adaptive equipment is very expensive to install and maintain.
3. I’ve heard people refer to me as “confined” to a wheelchair.  The truth is that the wheelchair is a freedom-giving mobility device that actually changed my life for the better!
4. People sometimes believe that someone who uses a wheelchair is “ill”.  That may or may not be true.  In my case, I’m healthier now than I was when ambulatory.  I once actually had a health care professional assume that I couldn’t be near sick people since my immune system is impaired.   That is a generality I hear often. The truth is that I haven’t had the flu in over 10 years, and I don’t get a flu shot.  The muscles in my extremities are weak.  Other than that, I’m healthy. Again, not all disabled people are “ill”.
5. Some of the most intelligent people I know are deaf or hard of hearing.  Remember that there is usually no causal relationship between the ability to communicate and brain function.  Some people also incorrectly assume mental impairment no matter what the disability.  In my case, my brain functions accelerated when I began using a wheelchair.  Prior to that time, I lived in fear.  That did limit my mental functionality!

Take the time to reflect on our commonalities rather than our differences and the world looks different.  It’s so refreshing to remove our emotional “filters” and kick away the generalities.

Remember, we are all in this together! 

Self-Determination

Few people know about the services offered at Centers for Independent Living (CIL’s).  I’m a board member for NEPACIL, the Northeast Pennsylvania Center for Independent Living.  My current office of president has afforded me the opportunity to do an orientation training session for new and existing members.  Of course, when you prepare this kind of work, the learning experience for the facilitator is enormous!

The overarching concepts of CIL’s are what are known as “core services”. Those core services consist of 1) Advocacy, 2) Independent Living Skills, 3) Information and Referral and 4) Peer Counseling.  More than ½ of the employees and board members of CIL’s are disabled.  CIL’s operate under the “Consumer Directed Model”, meaning that people with disabilities (PWD) receiving services actually direct the way those services are delivered.  Funding for core services comes from the Office of Vocational Rehabilitation (OVR) under the Department of Labor and Industry. 

In addition to core-funded services, CIL’s usually handle services under other government programs.  These might include the Department of Aging, Department of Human Services, Department of Public Welfare, etc.  But every program is operated under the consumer directed model, so self-determination ribbons through them all.

From my involvement in the NEPACIL, I can tell you that CIL’s cannot operate under core funding only.  So these non-profits are always looking for, and competitively bidding on, service contracts from sources outside of core funding.  And they do this while maintaining the focus on the mission of self-determination.  It is not easy.

As you can imagine, the services provided to PWD under these programs are life-enhancing and life-changing!  CIL’s facilitate community based living for PWD.  They do this utilizing “waiver” programs which, simply put, waive federal Medicaid rules so that states can redirect institutional funds to community programs.  It is a shame that federal monies for PWD are largely skewed toward institutions when community-based programs are less expensive and better for the consumer. 

The bottom line is this; CIL’s change people’s lives.   They are a very different kind of non-profit organization.  I’m proud to be part of it.

Restaurant Accessibility; An Opportunity for Business Growth

Compliance with the ADA is a concern for any business which serves the public.  It’s estimated that 20% of Americans are considered disabled, with an estimated $175 billion of disposable income.  From that standpoint the ADA actually creates some opportunities for the restaurant industry.  Here are 10 things you can do to make the most of these opportunities;

1.       Understand the laws.  The US Department of Justice web site has an area concerning business compliance that explains the intentions of the law.  It is not as ominous as you may think.

2.       Make “readily-achievable” changes to your facility so that it is as accessible as possible.  You can’t sell your services to people who can’t get in the door.  Ramping with zero-step access can usually be accomplished without a large expense.  Think creatively, and remember to keep transitions as smooth as possible.  Also, if possible look for creative ways to make restroom(s) larger and accessible.  For example, combining 2 adjacent restrooms for 1 unisex restroom may be the most optimal and least expensive way to make them accessible.

3.       If you have a parking area, try to make the accessible spaces as close to the building as possible and on the flattest area.  One or more van-accessible spaces (with a designated side-drop area) is something often overlooked by a small business, but important from the standpoint of a customer who is disabled.

4.       Signage for the accessible entrance, disabled accessible restrooms, and paths of travel make it easier for customers to navigate and provides a comfort level for a person with a disability.

5.       Lay out tables with an eye toward wheelchair access for at least a few tables.  I’ve sometimes encountered difficulties with roll-under access to tables; many tables use a center post that causes difficulty for roll-under access.  Having a few well-placed tables that provide this capability makes it more comfortable for a person who uses a wheelchair.

6.       Provide some large-type menus for those of us who have visual difficulties.  Also, staff can read parts of the menu to patrons with vision difficulty when they aren’t accompanied by somebody to help.

7.       For customers who are deaf or hard of hearing, staff can use a simple pen and paper to communicate.  Don’t assume that people who are deaf can read lips.  Lip reading is difficult, and even someone accomplished at doing so isn’t 100% accurate.  A great website that can help you get an understanding about hearing loss is www.hearinglossweb.com.

8.       There are three simple things that make communicating with a patron who has a mental disability easier; a) use simple sentences, b) make choices clear and concise, c) talk directly to the person as you would any adult.

9.       Advertise the fact that your restaurant is accessible.  This provides a much greater comfort level for people with disabilities and it will increase patron volume.

10.   Dealing with people with disabilities requires understanding and empathy.  Train yourself and your staff about people with disabilities.  Check with your local Center for Independent Living; many times, they have training programs available.    

When it comes to disability access, the key phrase is “readily-achievable”.  Making your restaurant disability-friendly and letting people know about it creates opportunities for you to tap into increased volume and profits.  It is a way to take customer service to the next level.

Opportunities for Your Business

Some business owners look on ADA legislation as just another compliance issue that's going to cost them money! Let's take a fresh perspective......

Business owners who make "readily achievable" changes are tapping in to something big; "disabled" Americans have $175 billion of discretionary money! 20% of the population is considered disabled. That's a substantial market from any viewpoint. Remember, the issue isn't just ramps, doorways and blue paint, this is an issue of UNDERSTANDING more than compliance.

Access to your business is a win/win proposition, and when you make accomodations, you are part of that win/win. It is really simple; people with disabilities want reasonable access to your business, so advertise how you do it.

Do some research! Here are some suggested sites:

DOJ site for businesses http://www.ada.gov/business.htm
Visitable homes http://www.concretechange.org/
Deaf/hard of hearing site http://www.hearinglossweb.com/
National Org. on Disability http://www.nod.org/

What a View!

I recently participated in a ribbon-cutting and dedication of the David Wenzel Accessible Tree House at Nay Aug Park in Scranton, PA. This attraction was the brainchild of Scranton’s Mayor, Chris Doherty, and was built by an organization called Forever Young. It’s named for David Wenzel, a former Mayor of Scranton who is a disabled combat veteran. The founders of Forever Young are Bill Allen and Phil Trabulsy, and their goal is to build an accessible tree house in every state.

This one is built overlooking a beautiful area of Nay Aug Park called the gorge. People from Forever Young say that this tree house is their largest and most challenging work to date, and the result is phenomenal. The view from the main platform is breath-taking! Much of the funding for this project came from private sources, with many local businesses and individuals contributing time, effort and money. The largest contributor was Wal-Mart Corporation with a contribution of $50,000. I have some pics posted in a photobucket slideshow. Some of them were taken by local shutter bug Peter Spader.

The City of Scranton and the Northeastern Pennsylvania region is experiencing unprecedented growth and revitalization. As a matter of fact, Money Magazine ranks Scranton fourth in their list of top 100 biggest housing markets by population. We are also the home of Yankees Triple-A baseball. This was enormous for me since I am a lifelong Yankees fan (what other kind is there)!

Here are some good links about our area:
Rediscover Scranton
Scranton Tomorrow
Work and Play
Lackawanna County
Chamber of Commerce
NEPA Visitors Center

Wheelchair Etiquette

Here is some basic “Wheelchair Etiquette” paraphrased from a website I’ve visited.

The key concept is simply this; Focus on the person, not on his or her disability.

1. Always ask the person who uses a wheelchair if he or she would like assistance before you jump in to help. Your help may not be needed or wanted. I’ve actually had people run up the hallway as I was getting out my key to “help” me with the door. Sometimes, even when told that help isn’t needed, they insist on helping anyway! Persons with Disabilities (PWD) don’t normally get upset with someone who opens a door for them; they do get upset with people who assume we need the help. Behavior like this shows a direct focus on the disability, not the person.
2. Don't hang or lean on a person's wheelchair. A wheelchair is part of his or her own personal or body space, so don't lean on it, rock it, etc.
3. Check your assumptions! Don't assume that using a wheelchair is a tragedy. Wheelchairs are actually a means of freedom that allows the user to move about independently and fully engage in life.
   

Remember, persons have disabilities, they aren’t defined by them. The soul and the mind define the person and many times, persons with disabilities know this best.

Choices.....

A person having a debilitating accident has an experience different than a person with a progressive disease. With a progressive disease, a person usually searches for and decides the “defining moment”. This “defining moment” has been decided for a person suffering debilitation from an accident or disease. Having never experienced sudden disability, I can only surmise how I would handle such a situation.

Everyone has different life experiences and in my case, the move to a wheelchair was a giant step up. I have a disease causing the progressive wasting of the muscles in the extremities. I was very fortunate in that I led a fairly normal life for many years. The disease then affected my ability to walk, move and raise from a seated position to such an extent that significant changes in my life were imminent. For several years, my life was sedentary, and the physical difficulty level of doing any activity was high as was the psychological fallout.

My defining moment came while driving home one day when I suddenly came to the realization that things needed to change. From the moment I made the decision to begin using a wheelchair, my life got better. Using the Pennsylvania Office of Vocational Rehab (OVR), I made the transition.

Some things I remember and a few suggestions:

• I dealt with a physician referred by OVR during my evaluation process. He told me not to become a hermit and to get out and do things. I had originally told him that I considered a wheelchair to be a positive in my life, but he never really listened. Main stream medicine is sometimes focused on the condition, not the person. Be sure to strongly participate in the decisions made about you. Nothing about you without you!
• I will never forget the feeling of exhilaration I had when I first sat in and used an electric wheelchair. Even though I knew I had to give it back, the feeling I had while using it was a something I hadn’t experienced in many years! Life is short, enjoy it.
• I am grateful to people who helped me when I needed it. Never be afraid to ask for help.
• People at OVR told me about the rules, the bureaucracy, and how I could never finish the process in less than 1 year. I did it in 6 months. Never be afraid to push the buttons of the bureaucracy. Bureaucracies care about themselves, not you.
• In time, I became a participant of the world and began to really enjoy life. The entire process completely renewed me as a person. I learned that people can change.

Revelations:

• Although well intentioned, many times people who love you will give you bad advice. It isn’t at all malicious, they just don’t have the perspective you have on the situation. So, love the people close to you, but live up to your own expectations.
• Never let the fear of failure stop you from achieving something! Staying in a “safe zone” will only make you more closed-minded.
• People sometimes have pre-conceived notions about disabled people. The best way to disarm those notions is to interact with them in a normal way, and don't be hesitant to talk about your experiences. This helps them learn that we are all the same, and it is only our level of ability that is different.
• Never feel guilty for doing what you need to do. It is your life, your choice.
• Never let physicians or other health professionals make decisions about you without your complete involvement. It is human nature for people to think they know better than you, so don’t get angry at them. They are part of a system that doesn’t promote consumer-choice.

          "It's our choices that show what we truly are far more than our abilities"