Let’s have a written disability dialogue.
“Alone we can do so little; together we can do so much.”
I may be resurrecting my private vocational program from 35 years ago. Now I have experience, emotional support, nd there is an extreme need (regardless of what anyone says). I am super motivated and the lady with me is the parent of a child with intellectual challenges and works at the Intermediate Unit. Best of all it was her idea she did not know me at all. I should have been working on my legacy 35 year ago when I began LARC. Timing is crucial and it was never right.
I guess “one doesn’t it all” said the maintenance man. This ADA apartment checked all the boxes yet, the shower had a flat floor and was enclosed by a huge door. I explained that I couldn’t get in since I needed to transfer onto my shower bench then close the door with a curtain. The other way was to transfer onto my bench over the tub but the toilet would be directly in front of me. Either way I could make it work the manager and owners of this $1895.00 dwelling changed their open minds. Furthermore, 2 bedrooms had non-commercial rugs which were forbidden to be removed. They said they’d make changes but didn’t mean it.
I asked what topic I should cover in this project. Someone suggested people’s hobbies and skills. This is good because all people are talented but don’t think that they are. I wish we could start a virtual TED talk format. We can all learn from others and it’s a good way to reach out and expand our networks in a different way. Let’s emphasize the other aspects of our lives, I love to hear perspectives and people’s stories. Are you also a chef, athlete, singer, knitter, musician, woodworker, dancer, public speaker, dancer. Email me at email@example.com Thanks.
Fitness + nutrition = Health body and mind. I created a nutrition program that also includes some points on mindset. It is important to know general basics about healthy eating such as vitamins and minerals. Eat fresh produce and vegetables over chips and Burger King…but why? What does excessive amounts of fried, sweet, salty foods do to the body? Understand why you’re eating, often people who are overweight eat for reason other than hunger. This may seem obvious but when you’re in the moment of depression or anxiety thinking is not as logical. Have alternatives and use them enough times for them to become habit
What you say matters in life, if you feel you’re being treated unfairly speak up. There are many reasons for this from professionals and individuals. 1) Lack of competence by professionals (they don’t understand an issue). 2) Limited time by professionals to inform consumers thus they don’t know what that don’t know. 3) No interest in informing consumers, there is apathy on both sides. I won an issue to get out of a three year contract with a 911 button company. The product was bad but the service would not discontinue. A easily extracted me from the service. The company preys on elderly caregivers and is unaccustomed to being challenged.
On August 18 I will give the most important presentation for the year and for ever. I have ten more days. No more information is needed; after listening for hours to speeches and reading books. Nor are expensive flyers, ads, or attending far away locations to reach people everywhere. The program will be replicated in other counties because it’s not a rally that requires as many people as possible. I will just do what I usually do which is write and re-write the notes till it’s committed to memory. I waited months to do this because it did not congeal till last week. I will start with an open ended question and end with my testimonial.
Socialism. This is 1 issue of which all people should be concerned- especially disabled. It means every aspect of life will be controlled by government. In the area of healthcare we have been forced to abide by the bad decisions made from government controlled workers for years. These doctors, rehabilitation & hospital staff , wheelchair companies, adapted van companies, etc. do not know or care about the plight of the person who relies on them. The bottom line is always cost so we receive products that are unsatisfactory. If capitalism is replaced we will no longer be encouraged to be independent and those of us who require medical treatment will be judged whether our lives are worthy of treatment. Socialism.
My parents continue to have no faith in me. I got the perfect gift for my parents anniversary. Kosher meat from a butcher in Maryland, theirs doesn’t exist anymore due to COVID. I knew the drive wouldn’t be easy (rt 695) but it was a good experience. Dad got mad for a different reason, he assumed I was going to travel to a cousin 3 hours away who can’t come out of her house (broken leg). I became irate and explained that I get mad since he continues to have no faith in his handicapped daughter. I will learn from google what other people in my situation do (if there are any).
I added a section on the Trump campaign. I hope it doesn’t turn people off but I need to be doing something to educate voters. Events are being cancelled by the boatload. I spent all day yesterday writing a power point on why people should vote for him even if they don’t like him. I won’t offer a meetup because I don’t have a location. I had been attending flea markets that had Trump tables. However, I think I’ll advertise in the “community category” on the local Craigslist program. So much more needs to be done!
I have lost my patience with the Lancaster Republican Committee. They have a building that is inaccessible. I requested that they move 1 or 2 meetings to a different location. Instead they send a girl out to (appease me) meet with me. I don’t get registration forms and I don’t get their letterhead. They are so slow and disorganized that I doubt Lancaster will win in this area. I wrote 5 long documents of info, planned to create house parties, and find ways to discuss ways of generating interest. After 2 years trying to help I stopped and will refocus my efforts in Northampton. My vote counts too.
Today I am giving my talk on self-advocacy for Disability Pride. I am not ready to host a meeting live so I think this is the best way. Rather than a forum, as planned, I am turning it into a discussion based on my booklet. It will be a quick summary of the 6 categories in life that people may need to speak up and suggestions in each area. I hope it works well.
Campaigning Purple– What does that mean? Well, to capture people’s attention I will not pressure anyone to choose a side. The goal is to inform people and then allow them to make an informed decision. I am so convinced of my own choice that once I give people the facts on his accomplishments and explain what else he promises to do there will be little more to say. I also seek interaction between people; ongoing dialogue with opinions expressed safely is crucial to bringing people onboard.
Years ago I wrote “Plight of the Veteran.” This was a series of monologues illustrating common challenges veterans and families face. Examples include reintegrating into society, life at home while deployed, etc. I realize that with a few changes, “Afflictions of the African American” it can be a wonderful source of dialogue and awareness on what is experienced by the population. I will send it to churches and see what happens. It would be helpful to have someone assist me who has lived it.
“Make your mess your message.” Robin Robert’s mother said that. COVID 19 and the looting is putting thousands of people out of work. Will people with developmental disabilities be considered as applicants? It was difficult for them to begin with before all the countries problems. Therefore, one solution is to establish a business, (a bakery) run by people with disabilities. I do not propose to start from scratch but negotiate with an already established entity. Restaurants have been shown to be successful so I will start there.
The violence throughout the country after the death of George Floyd, a black man shows the importance of education and integration. There is a need for people to take the time to understand people who appear different on the outside but are they are the same on the inside. Society has improved but it can benefit from more since there are many people who subscribe to stereotypes. Unfortunately, there are many who remain silent. People with disabilities also fit this pattern. This is why I continue to promote disability inclusion and ask others to do the same.
Zoom is a great alternative to meetings in person. I eliminates travel and all the hassles that come with it. However there’s an even better benefit for some people with disabilities. It is the great equalizer; it eliminates stigma. A wheelchair and other medical devices that may negatively contribute to another’s judgment are not seen or less obvious. Therefore, the person’s contributions to the meeting are focused on rather than his or her appearance.
Operation Finally Home was founded by Craig Morgan, a country music star. This man was in the military for 20 years and knows the numerous challenges encountered by the veterans who were injured severely. Since there are no locations in the north east or central states, I am will propose that the staff would be interested in my offer or at least ways I can help since outreach is not new to me. I think I could include it in the Disability Pride Parade; they are offering a full month of events. This is finally the project that may be receptive to “Do It Yourself Disability.”
I am dreading the upcoming project – moving. It is not the actual traveling with the stuff it’s finding an accessible destination. It is not until September but the process is usually a long and frustrating one. People things are accessible but I get to the location only to discover it’s not even close. “It’s only one step” rental agents tell me as if it is no big deal. One place is one hour away and the other is two hours away. Either way I can not remain here in Lancaster.
I’ve been writing about some techniques I developed, exactly when I have the problem. For example I needed to put a package of raw meat in the freezer. I have weak fingers and arms. I used to be able to use my reacher or lean over. There was a piece of paper too thin for my reacher. I took a pencil with an eraser, turned it around so the eraser slid it against a wall and then crease it so I could then pick it up. It’s really hard to understand if you don’t use a wheelchair. There are many other solutions I have created on the spot
Safety is #1 when you live alone and rely on a wheelchair like I do. All types of movement (transferring, driving, dressing etc.) must be done smartly and slowly with full focus. Getting into bed should be a no-brainer but making a mistake with consequences is very possible. I put my soft, fluffy blanket on my bed since that’s a normal thing to do. Well, I threw my arm out on top and started to lean over to pull up my pants. My arm slid out and I fell sideways- the most comfortable fall ever but nonetheless it was a fall and I had to wait for someone to help me sit upright again.
Our economy will need a variety of components in order for it to thrive. 1) Grow a strong customer base. Restaurants must re-create their marketing efforts strategies in order to ensure that their establishments will be sustainable. Time and funds are likely to be limited, but these are all DYI projects. If you’d like the list of 38 incentives let me know. Then spread them to others. 2) Empower citizens to share goods and services. “Time Banking” is a community exchange program that encourages people to help each other through a type of bartering service. The currency is time not money; you spend an hour cooking a meal for Bob and then Bob can receive 1 hour of help from Carol to transport her to the grocery store.
I sometimes partake in webinars on self-improvement. Yesterday the speaker offered 4 general steps to creating what one wants and making it happen. Three key areas are learning what you want, what your skills are, and learning what holds one back. I’m going to do the work needed to make my own plans, creating a successful disability awareness program happen. I have a structure that has been in place for years. Now I just have to develop it more and reach out further. I may use Zoom to offer programs online.
Driving is sacred to me. I am so grateful to be able to do it and so cautious while I’m doing it that I can’t imagine why people would not be. My parents are 83 and 84 years old…and drove from Pennsylvania to Florida. They stayed overnight once on the way up, which was better than last time when they drove straight through. But this time, after a stop overnight in North Carolina to see my Uncle, they drove 560 miles straight. It became dark outside and the roads were wet. They are constantly telling me to be cautious and not drive here or there but there’s always a double standard.
I’m concerned about the plight of people with disabilities during the Coronavirus situation. Clergy and others are reaching out but what if the person needs attendant care help and/or transportation? It took 6 tries till I found a store manager who would hold a package of toilet paper for me. I can’t fight another customer or keep returning to a store hoping a shipment arrives. Even then, workers repeatedly say they don’t know what items will be on the trucks.
The faith community is a good audience to talk with about diversity. So often disability is overlooked in favor of race, religious, and gender. On Tuesday night I addressed my Lifetree group, which is a faith based group in a coffeehouse type atmosphere. I found a wonderful 12 minute video which I split up into three 4 – minute intervals. Each time I paused, I stated some points that I thought were meaningful during the film. A little discussion ensued and at the end people offered positive feedback. However, nobody was inspired to start a group on disability awareness. I’ll keep trying.
Since I told my temple that everyone should be recognized, a “Member Spotlight” was approved to be in our newsletter. I get the chance to meet some people I wouldn’t normally. That is exactly the reason for this venture. So many people get overlooked now but back in their earlier days they had a lot to offer to their families and the Jewish communities. I hope others would have a positive reaction. The people I chose may be uncomfortable with my two questions. Perhaps they will appreciate my efforts. The only issue is it must be done in two weeks and the people featured may not respond too quickly.
There’s a group of church people who get together to discuss topics and a prayer is added at the end. It’s a wonderful way to get to know people. A new format is needed since the old one will expire soon. I came up with an idea to show videos on topics and then discuss them. It turns out that the person in charge is a really sweet friend I’ve known for weeks. My first thought was to show a TED Talk each time but that program has a copywrite with many regulations. So now I’m thinking there are other speakers on youtube who expect people to listen to them. I’m speaking on disability next week and I want to be in charge of continuing this type of venue. Probably no one will voice an objection and if they do that’s great, I’d love to work together with other people.
I’m meeting with a lady who wants to start a cooking delivery program and one with a land preservation program. Both will include a disability component to their businesses. My goal is to infuse disability in establish- ments that are far removed from the topic. It is good to be creative. The first one will have a few customers and a newsletter on adapted kitchen appliances. The second will conduct a staff meeting on disability inclusion at my request.
Lancaster Foundation approached me about doing a Disability Dialogue for everyone. I always thought that there isn’t a venue for people to ask questions to better understand. This is exactly what I’ve been waiting for because the agency is well established and people will expect a unique program like this. It will be geared to people who may be uncomfortable with the subject but have considered the idea of disability inclusion. I have heard that from many people. I wrote a resource list for the handout and I’ve been trying to reach speakers. This will be a wonderful format to share with others.
February is Jewish Disability Month; here is my project. I wrote a letter about this fact to synagogues throughout the country. I explain the purpose of the day, ask if something will be done is their own houses of worship, and offer simple ideas to implement a program. I then share my website and offer to help in anyway they would like. I hope this will encourage people to spread the message on disability inclusion and allow me to meet people who are interested in this all important message. It’s more direct than typical marketing techniques.
If a person who uses a wheelchair wants to diet the #1 advice is to consult a doctor. WHAT? We aren’t sick that should have very little to do with anything. We can’t rely on the BMI (body mass index) number since we don’t walk and that number is based on the amount of energy one expends while getting around on legs. I doubt that a doctor would even know.
So, here my final advice: 1) keep a journal, 2) eat smaller portions, 3) decrease sugar, salt, fat, 4) lift weights, and 5) eat healthy- 3-5 portions veggies, 2-4 portions fruits, 2-4 portions milk products and 3 portions of whole grains.
I want to lose weight the only problem is that the #1 exercise is walking. Well, if I could do that I wouldn’t need to lose weight. So I found a program in Illinois that has a nutrition program and asked if anyone would like information on dieting. I was told yes but it there is a long approval process for my work. I decided to do it independently and ask people on the two facebook groups to which I belong. I started by putting in keywords “weight loss” and disability. I got nothing so I will start with the nutrition information I already had on the topic and proceed from there. Perhaps I will generate interest with a more universal topic.
I just offered the Quality of Life Grant to the local center for independent living in Lancaster. It would be a perfect fit for them to speak about the benefits of hiring disabled employees to the employers in the county. The Christopher Reeve Foundation would be a perfect venue in which to receive money for doing a program they would do anyway. Another program for which to get money is the Circle of Friendship in Allentown. It be for a program on disability awareness for families. We’ll see what happens.
Two ideas for helping people with disabilities. First, I just read another article about an eatery, this time a bakery with disabled employees. It makes so much sense. Many of the jobs are repetitious anyway i.e. customer service, wrapping silverware, prep work, etc. I really want to grow part of an established place. Second, handicapped heartaches will be a website to support people with disabilities who are told “no” by the experts. I have found too many solutions to not shar them with others. I just need a website
Socialization and parenting are two programs offered by the Friendship Circle in Allentown. This will be an opportunity to generate interest, funding, programs to an existing non-profit I will be helping a director that wants help and will directly benefit from my work. I will be working on two projects here for the place there and once I have established my own abilities and skills I will work there. It is good to have a meaningful plan to strive for in the future. There is no need to patiently await for things to happen.
Microaggressions are comments or behaviors that have negative connotations which can be demeaning to a minority population. There are 4 categories, says Kristin Conover PhD. Helplessness is treating people as if they are incapable. Minimization is assuming the person is just dramatic and they are actually more capable than they appear, Denial of Personhood is equating a disability with lower intelligence, Otherization is associating differences with inequality (disabled shouldn’t be parents). If this happens often, it can lead to severe depression. Before reacting, consider 1) if it’s a valid concern, 2) possible consequences of reacting, 3) ways to respond, 4) appropriate responses.
In honor of October being National Disability and Employment Awareness Month I decided to write articles on disability and employment. The title for each one was “Make Work Work for you.” I wrote on accommodations, stigmas, benefits of hiring, tax incentives, veterans, hidden disabilities, success rehabilitation programs, entrepreneurs and recruitment, retention, return on investment. I will be featuring big businesses who have created vocational programs in the community.
I wrote a play about a piano player with Asperger’s who can make a piano dance but you’d never know it from talking with him. I started it with just a general outline of the scenes. I finally went back and put words in the mouths of a few characters. I thought it would e the hardest part but it wasn’t. I watched soap operas so I’m familiar. It’s a very typical portrayal of a life with a disability. Now I am really motivated to take it to a few places. Maybe I can get the attention of someone, I’ll certainly try.
October is National Disability Employment Awareness Month so in honor of this I am writing articles in my linked in account. I started with sharing information on benefits of hiring disabled employees. I then wrote about business initiatives employers have taken to promote hiring of employees with disabilities. I will finish the series with some of the success stories by employees with disabilities. Shining a light on this issue will hopefully increase the employment rate of the disability population.
The Chocolate Walk by someone who doesn’t walk” I use a power wheelchair to ambulate throughout the day inside and out. I’m used to it and often forget this fact. That was until I visit Lititz, I just avoid the stores when I come but in this case that would negate the entire event.— I enjoyed volunteering for the event and did manage, but eventually I became quite frustrated. Don’t store owner’s realize that my money is equally as good as that of their customers? I never patronize stores where I can’t enter.- would you (readers)? The Americans with Disabilities Act has existed since July 26, 1990 and the Grandfather Clause (exemptions) no longer applied after 2010.– Once, a local official tried to convince me that Lititz can partly follow the law. That just tells me the town officials wouldn’t want me to live there. I merely request for a compromise from a town that was voted #1 in a national poll in 2013 as “The Coolest Town in America.”
Rotary Clubs are good ways to learn (from the speakers and members who are well connected. I am tired of networking groups and chambers of commerce meetings. They can become expensive experiences that are mainly dating sites. Speaking to vendors at expos and job fairs can be a good form of outreach. There is usually a good mix of employers in business and social services as long as the messages are concise and clear.
The Veterans Expo in Camp Hill had many vendors and a steady stream of people, mostly who were veterans. I offered to connect the businesses representatives with the employment counselors for veterans. I am in the process of making calls but there is no guarantee that my hard work will lead to those at career links will make the contacts. I will try a few even though there may be no follow through and I will never know. I choose to believe this will be a meaningful talk for a veteran along the way.
The disability section for fans at some concerts do offer better seats (even if we’re sitting in wheelchairs) but there’s an issue I have. When the concert is over workers block the aisle until most of the fans have left. If the section is indoors waiting for an elevator can be very time consuming, However, if someone needs to leave before it is approved, you are not allowed to do so. Driving home has a much longer car ride as you wait in your vehicle. If a person does not want to wait you may have to be less than polite to get out. You’re considered a rude individual regardless of the real reason.
I have always found county meetings that have networking components to be much more meaningful than purely networking events. Lancaster County has a monthly program called LIINK in which participants are members of agencies that serve disability, elderly, and disadvantaged populations. Each month there are two presentation from members explaining the work they do and informing others of what their agencies are presently doing. I ask a question and sometimes reach out to them at a later date. Yesterday I met a lady from a home health care for people who have permanent disabilities and the CEO of a vocational rehabilitation. These people cover the two areas of Infobility- employer relations and empowering consumers.
Sara Hart Weir was the CEO of the National Down Syndrome Association and is now running for United States Congress. She can bring atttention to our population. I live in Lancaster not Kansas but for me disability trumps constituency any day of the week. I will look into facebook sites and independent living center sites in Kansas, there are 26 of them. She will benefit from my help I hope I can find others who will help too.
I just discovered a program for children with special needs in the Lehigh Valley. I am eager to learn about it and get involved. They are the charity of choice for the bike ride 4 friendship which my friend is taking next year. This is a wonderful reason to move home especially I think I can interest them in my doing outreach for them. I can’t imagine they would not want more people knowing about them. The larger the scope the greater the funding. I am most happy when I am cornnecting people.
I’m going rouge- I’m getting a new power chair from a person without government intervention. I was trying the usual route and just “spinning my wheels.” No one seemed to know how to start the process (a problem never experienced before). 7 times I got a prescription on a doctor’s notepad stating I need one. Suddenly that wasn’t the correct procedure. It now needs to go through a business called “Superior Oxygen” WHAT? The office in Lancaster no longer does power chairs, it needed to go through Reading. Okay, the guy called me asking where I lived, he didn’t believe me. He hung up on me. Then he called again and said he’d come for a home visit Thursday. WHAT? I never had that. Whatever. I called Thursday to get an ETA I was told noon he’d call me. Well, he called at 2:25 then he was mad at me? I called a man in another town who did private pay and I made an appointment. After 20 minutes it was done. I will have the best chair ever because I was in charge of the process.
Surprise- it’s a new toilet! WHAT? I always said my parents did not understand my disability. I have often thought that since they would give me bad advice when they gave me bad advice about a new wheelchair “contact a representative for help” (even though they have no interest in helping me), “be nicer to the professionals” (even though they’re screwing me)” etc. As of 2 days ago I have a real life example. They bought a beautiful toilet that is supposed to be a brand spanking new handicapped bowl. They were so very concerned about my struggle in the bathroom. Not only is it still too low. Not only do I now have to be worried about putting marks on the porcelain. BUT it never occurred to them to ask me for advice first. There are dozens of other plastic seats that can be better secured on the toilet. Much much cheaper. They still think they know better.
I am very concerned about Socialism. As a person with a disability I should be and so should everyone else with a disability be concerned. Not only is the government totally in charge of my choice of wheelchair and installation of hand control in my van. Once this type of government is the only program available, there will be no preexisting conditions and ending a pregnancy if the fetus looks like it has problems it may be aborted. No one gets it but they will, once they are subjected to it. Once gas, food, and everything else goes sky high it will be too late to change the course. How do I help people undersatand?
“Autism the Musical” what a great film! It’s all about what happens for the kids who belong to “The Miracle Project” an evidence-based, groundbreaking program which helps children and young adults with autism and other special needs build communication and social skills, community, and greater self-esteem though music, acting, dance, acting and storytelling. One of the kid’s parents has a wonderful comment. She said her daughter and others are not valued by society. People don’t give the person with a neurological disability credit for what (s)he CAN do because they are based on false assumptions. This needs to change. We need so many more/ powerful people in order for this to make any difference. Otherwise these people will be forced to live a life of emptiness and maybe worse.
My quest to order a wheelchair has become a quest to secure a provider. So many surgical supply stores have closed due to poor Medicare reimbursement. I am now left with two options- the person who ordered me the wrong chair last time (the reason I need one before my five year eligibility is up), or the company that scammed me (and I proved). I can not work with a provider from Allentown nor can I pay for wheelchair privately to avoid the process. I know exactly what I want so why should I take 10 steps backwards to receive an evaluation and work with a provider who is unfamiliar?
General Hospital hired a lady with cerebral palsy to play a lawyer for a character. The storyline is front and center so she’ll be on pretty regularly. The first reaction I read two fans who were judgmental (she has a bit of a speech impairment). Then I went to a much more popular fan site and there was an entire section devoted to her role and the great job she’s doing. I think the world has a basic understanding of disability. However, when the person has a more involved physical disability the stigmas still remain strong.
Awhile ago I met a guy with a disability who sat down at a random piano in the city and he made that piano sing. I learned that he plays by ear and he wants to perform more. I connected him to the director of the theater program at a large college and receives many awards and grants. It turns out that this man, Barry, helped him but Brad needs more opportunities. I enjoy helping people who seek assistance, what a great project for me and for this piano man. Music is always an incentive to draw people.
Thinking differently. It doesn’t matter how you reach success as long as you get there.
Alli Stroker is a lady with a disability who just won a Tony award. She clearly had a few extra hurdles to fame. Her message is to limitations into opportunities. Imagine if all people did that… think differently rather than give up. Consider other ways to reach a goal. Not only is it important for the person to think outside the box but also society must do that too. Once that happens people are usually pleasantly surprised. The word impossible is actually “I’m possible.” Such a simple and powerful lesson/ observation.
Linked In is an interesting forum for promoting a business through articles. Last week a man from Vector Security expressed interest in disability. Never one to pass on an opportunity we began a dialogue through emails. The first thought is always to offer a presentation. My second thought was to offer a paddling picnic through Team River Runner. After explaining when and what time we would be available I made another business offer. Since the owner of Texas Roadhouse is not responding to the unique suggestion, I tried with a different company. Also I will connect the human resource managers from all over USA to Veteran Employment Specialists. We’ll see.
In a community exchange program products and services are considered of equal value. It does not matter whether you are a doctor or a person with a disability. For example: I spend 4 hours helping Beth pack boxes to move to an apartment. I then use those 4 hours receiving help from Debbie with cleaning. Sure there are a number of incidents where time is not recognized as a currency such as paying bills. Furthermore, there is a significant amount of documentation. Also there is an ongoing commitment and trust to the success of this program. To learn more, watch a youtube video, visit http://www.timebanking.org, or contact me.
People can not seem to understand why a person in a wheelchair may be waiting for a bus. I guess they assume everyone uses a share a ride minibus that picks you up at your house and takes to the front door of the drop of point. I was waiting for a bus on the side of a busy highway this weekend. I was in no way blocking traffic or blocking the drivers view but nonetheless 1/2 a dozen people asked me if I was okay. One person even called the police. The guy drove up to me, didn’t even exit the vehicle and said someone called this incident. Later, I felt bad because I was not super nice to nice guy who approached me explaining that he lived nearby, wanted to check and offered me a bottle of water.
The keynote speaker of the conference began by speaking in very broken English. Then after talking a few minutes he began using perfect English. Some people make quick negative judgements then then after learning more, views change. In the case of disability, a person who can’t walk may sit on a couch for a few minutes and the mind says “normal” a person who walks may sit in a wheelchair for a few minutes and the mind says “disabled.” I want to do “the wheel challenge.”
Diversity was the topic of the Lancaster Society Human Service Managers. Semantic are important so rather than “stereotypes” which have a negative connotation it’s “people patterns.” We make quick decisions that can be harmful. Just think before making our decisions. For example, just ask before helping a person, (s)he may not was help. There are many reason to refuse assistance including the following- they want to be independent, they want to increase muscles strength, success increases self-esteem. Sometimes saying “no” leaves the other person offended. However, in general things are getting better. We have more to go.
Restaurant staff with disabilities has always been in the back of my mind. I will seek an established place that could benefit from some added attention thus increase in sales. When a business has a new component it becomes newsworthy. This way job placement will be a little easier for job coaches and the community will see that disability does not mean uncapable. I am interested in the café in North Caroline, the restaurant in Denver, and the one in Allentown. I will start by seeking advice from professionals in the field.
I’m searching for a video to enhance my next disability program. While on youtube I noticed a film from a happy couple one of whom has quite a severe disability. It was so refreshing to see these two people interact at home and manage in the community. I realize it is getting increasingly common, however the fact that the guy requires 100% help and the girl is beautiful is much less common. They traveled to France and Italy in addition to all the other “normal” things they do. Furthermore, the man has been using a wheelchair since birth. In many cases the couple stays together after one has a severe accident. It really would have helped me if I had someone to befriend or mentor me.
Networking is crucial to growing a program. Meeting people is the easy part; educating and encouraging them to become involved is not. People say that inclusion is important but it makes them feel vulnerable since anyone can be disabled at anytime. Originally I was interested in reaching out to the Lancaster community. Inclusion means being welcomed into local groups and hired by local businesses. Then I attend conferences and offer to share my work with the groups who have similar goals. It may be worthwhile to prepare others to be on the frontlines in addition to me. I will try Harrisburg in June.
Quality vs. quantity. On the one hand it’s good to meet as many people representing agencies and share business cards with them all but on the other hand it isn’t possible nor necessary to attend every convention, networking event, expo, and meeting. It was nice to have conversations with people, discovering commonalities and reciprocity. How can I help them and possibly they will be more willing to help me. I am looking forward to each of the journeys.
Suddenly my adapted van door wouldn’t close. Spots #1 and #2 in my hierarchy of needs isn’t food and shelter rather it’s my van and my wheelchair. It was 4pm and the place I thought I needed to fix it is in Harrisburg. In this case it was undrivable since the ramp was open as well as the door. I called and they didn’t seem to be bothered. I wasn’t on their repair list. I was #8 in line. I called the place in the next town. Sometimes they can help if it’s not a hand control issue. They said come at 7:30 then explained how to safely drive it over. They fixed it completely and they described in detail what they did. I was right, the chain put in a few weeks ago was problematic. Why? It was missing links and he picked up a few that fell out. That “new” chain could not have been new. I bought them a jar of pretzels and tootsie rolls. I’ll ask the man if I can help marketing for free.
I wrote follow-up notes to 90 vendors. Each of my notes were all different to show that I read their websites. I did ask everyone to share my site and I got a few replies. I met a lady who has a resource website who was interested in what I do. I was asked to help create a blog for a site. I just spoke to someone in Vermont about incorporating some of my work into the employment counselors part of their work. She seemed interested.
I was very impressed with team at the Quality Inn at 880 Kidder Street in Wilkes-Barre PA. As a physically disabled guest, I have many horror stories but not last night. Others need to hear about my experience. I needed my bed to be lower so I could transfer from my motorized wheelchair and needed help getting up in the morning. Employees were willing to remove the box spring and make the mattress with the pretty yellow blankets. Other accommodations included a higher toilet, a separate toilet chair, a higher sink, and a lowered closet rack in the bathroom. Another accommodation was a key card provided for someone to help me get up in the early morning.
One of the biggest and most established conventions for the disability population is the Abilities Expo. I attended the event for 15 years; I went yesterday. I decided this would be a good test to see if Infobility would be of interest to vendors. The have vendors for wheelchairs, vans, and a variety of products for people with disabilities. It is a really efficient way to learn of what is available and dialogue with educated representatives.
Survival for non-profit organizations and programs for consumers have become harder and harder to sustain. One practical solution are time banks. In this program, services are not paid with money. As the name suggests, time is the currency not money. So if someone Tammy spends 3 hours helping Tim do errands, then Tammy is eligible to get 3 hours of help doing something he needs. In the disability world the needs include many non-specialized services. I am determined to introduce this program to any community.
I have always said that attitude is over half the battle in coping with a disability. I saw proof of that phrase yesterday. Yesterday I went to visit a friend who was in an accident and placed in a nursing home for rehabilitation. The place is a nursing home run by the county. The rooms have 4 people in them and it is noisy all of the time. A lady wheels in looking like model. Her nails were perfectly manicured and dress was pretty and bright.
She had the nicest demeanor and smiled a lot. She spoke highly of her children and her many grandchildren whom she rarely sees. I asked her how long she’d been there. She said over a year. She’s become my inspiration and I look forward to seeing her again.
I hope I lost some weight this week. That’s been my personal Passover goal because I don’t buy ice cream and candy and eat fried foods. Everyone follows it the dietary restrictions in their own way; most probably do not. Losing weight for someone who sits in a wheelchair and has weak arm muscles and no leg muscle, is hard. The number one exercise is walking- that’s impossible. Nonetheless, I have my 5 pound weight a power grid, and therapudy. Since the numbers fluctuate so much I probably had some success.
Giving. Yesterday I attended the Lifetree program and I brought some snacks for the food table in the back. Since the topics discussed change but are always different I assumed there would be something I could contribute. Well, this was the only one in which I didn’t so I sat it the back rather than at a table of four. I looked over at the table of food, mine was mostly untouched and I realized something. There was a girl there who has very little money and food so I took my walnuts and macaroons and packed them up for her. She began eating them immediately. Later I looked at the small bookshelf and realized I was driving around with a book that would be perfect to add.
Socialism– it’s not a new concept for many people with disabilities. The government makes decisions on what company installs the hand controls in a vehicle. Sure, you are asked to choose three companies but they will go with the lowest bid regardless of the qualifications of the company. It was determined I would use a company, who shortly after they won the bid, was informed that they never did such an extensive installation. The government also tells you what vehicular companies are adaptable to hand controls. In this case you are paying but that does not matter. The same goes for one’s choice of wheelchairs. I received the wrong model yet no one would admit the real reason and no one cared- I could tell. Soooo frustrating.
Tomorrow is my first concert of the year. I always go to a few in the spring/ summer it never gets old. It’s the most “normal” thing that I really enjoy doing. It’s crowded and parking is always a big hassle- but it’s always worth it. There’s nothing like hearing the songs in a large arena with 1000’s of others. I never like to be in the handicapped section even though it’s usually a better view. Once, when it was outside, it started pouring and my wheelchair quit. I still continued to go because it’s uncontrollable. Outside concerts have a lot of distractions (drunk kids) so I go to stadiums less frequently.
I spent the day listening to the Director of the Independent Living Council on the state plan. He was apathetic and unprofessional and began the meeting by saying “Here’s the plan we submitted, it’s the exact same plan as last year since our funding is exactly the same. Do you really want me to go through it, it’s the same as last year. Don’t ask me to add anything. I’ve been taking people’s comments through twitter, facebook, email, and phone. OVR is starting their waiting list they have money I guess we should adjourn now.” Lancaster had no representative nor did York. I felt like saying something to someone but it would fall on deaf ears. It’s sad when the top level of the disability community has clearly given up.
I was in the process of helping a girl in a wheelchair get help since she was evicted and her landlord kept her chair, he probably sold it. I was really making progress on my end, the housing director in Lancaster even requested more information. Suddenly I stopped seeing her. I guess the girl didn’t expect any progress to have been made. Her new situation has become worse. I wouldn’t let her leave my area until I gave her all the info and contact her her another time. Maybe it will work out for her someday, it may just take time. She never advocated for herself and it’s a skill to learn and practice.
There is a man in the next hallway who has attendants who sleep over. I thought he was so impaired because he stays in his room most of the time. Many people with disabilities are more capable than they seem. If muscles do not get used regularly they atrophy. I realize there are those who do require the extra help and others are too busy to exert so much energy and time to manage. Government is decreasing the funding more and more. One way to deal with decreasing costs in using time as a currency rather than money. Community Exchange is a program that should be implemented more.
“Advocacy is the best policy.” I know that’s not how the phrase goes but in my case, it should be. I got an oil, lube, filter recently; I can only go where they have a long window to look up at the bottom of the vehicle cause I won’t drive it on a lift. I must drive my own vehicle always since a Dodge dealer crashed it into a work bench. So after the initial service I ask for windshield wipers since mine were no good. The man took my debit card and came back with the wipers and card. He then took one look at my situation and said he couldn’t install one because the arm is bent then he did the other even though that arm was bent too. I asked for my money back two times and he gave me $9.00. So essentially one wiper cost me 14.63 since he said installation makes it cost more.
I met a 20 year old man with some learning challenges. He was playing the heck out of a piano everywhere he could in downtown Lancaster PA. I talked with him and he told me how much he loves playing, can’t afford formal lessons, but can play by ear. I thought for a moment and gave him the name of a man I know who directs the theater program at Millersville University and helps people with challenges involved in the arts. I had seen him once since I met him but not again so I was ready to touch base with him. I just found out that, due to the connection I gave him, he is now involved in a wonderful music program at Millersville. He must be thrilled. I never saw someone quite as motivated, now he may be on the right path. All it takes is motivation- that’s not a lot to ask for, is it?
The preparations for the disability program are progressing. I can tell business owners aren’t quite sure what this is all about. However, they know it’s a good thing for the community and for them because recruitment, retention, and return on investment are the three biggest problems in most companies. Disabled employees “fix” that problem. There are differences HR departments need to understand and that is what I explain. Recruitment- find people at disability conference or in partnerships. Retention- the match results in loyal, motivated, and hard- working employees. Return on investment- for the few accommodations that are costly tax incentives defray costs but 59% are free.
The hardest part to a program is getting people to attend. That issue is true literally and figuratively. Literally, I have a new wheelchair and van since the last time I wrote. However, I also have a new lease on life since the last time I wrote. I am going to make yet another go at Infobility. My programs will be in Lancaster and offer fun and facts to people who reside in the community. I will present opportunities to business owners, employers, teens, as well individually empowering people with disabilities. On July 17, I am partnering with Dental Arts to offer a program that will discuss integration of all into the community. I’m learning about establishing a wheelchair basketball team.
It’s really time to get to the bottom of this chair issue. I’m so accustomed to learning to get used to things that I don’t even voice any concerns with anything but why should I accept something that’s wrong? No average person would. There is no way this type of wheelchair was what I was supposed to get so what really happened? I really believed all the trouble was due to Invacare not caring but, I hear nothing back from CME and I never met a provider I liked. It follows logically that they are the one’s who screwed up. I got the email address from customer service in Ohio and it’s time to find out what was really written on that order form and how long my warrantee is.
I plan to get more involved with Lancaster County. My area was awarded $100,000 and they are seeking residents perspectives and ideas like surveying the needs in the area. I’m pretty disappointed that no other people with disabilities were interested in signing up. I want to be seen as a team player. It is easy for me to get too wrapped up in my own ideas and not be receptive to others. In the end that will make me (possibly disabled people in general) look badly. However, it is useful to give a disability perspective.
I’m really working hard at generating interest in this event. I volunteered at a July 4th picnic to put out some flyers. When I arrived I was instructed to put some flyers on a table under a tent. I went to the location but it was too passive for me to do it that way. I visited a few of the tents and had wonderful conversations with people in each one. I now know people from more groups and already have in mind connections I can make for others. I was never comfortable with putting something on a community bulletin board or calling the media. Now I must work on making a sheet with my various disability programs and also getting a bit of an introduction together. Otherwise people may just come in, turn around, and leave!
I just had lunch with an old physical therapist. She says she gets mad when people in public are illogical, and talk to her instead of the disabled individual next to her. It’s interesting to hear other perspectives. Unfortunately many people with disabilities who I went to school with still really don’t ever live on their own. How can they be happy with that? Imagine what they are missing. The lady reminded me of me. I had forgotten what I was like, how did I end up like this? On my own completely – in an apartment,
I visited my provider again since I got this new wheelchair it’s not what I ordered. The entire chair was too high and I was certain that this was not what was ordered. Well I wanted to compare the order form written with the order form that came with the chair from Invacare. I was shown Invacare’s and noticed that the form was horrendous, there is no need for a description! Invacare sent the wheelchair what they had in stock that was the most similar. The service man found a way to lower the seat 1 inch and it feels better. What a nightmare it has been for four months! I thought I could just get used to it but in this case it was dangerous to do that; I kept losing my balance, dressing took twice as long and bathrooming took at least 30 minutes and much more. This should not be!
Today I spoke with the director of the Office of Aging. I was horrified by the way a caseworker was communicating with my friend who is a consumer. I was sad that Betsy saw nothing wrong with being spoken to in such a condescending manner; it was always that way. The director apologized and said they do include disability sensitivity in their trainings; unfortunately it is just touched on and rarely implemented. It needs to be emphasized and role playing should be done. I mentioned “The 10 Commandments of speaking with someone with a disability.” The director expressed interest in scheduling the film once there is more time.
PennDot, with their nonsense rules, has tried again to make my life miserable. I need an inspection but there are new rules in which people with vehicles that have hand controls must go the specialized auto mechanics for the sticker. I am sure anyone with a van like mine can realize the problem before saying the word “inspection.” There are very few auto mechanics able to drive a vehicle with hand controls like mine. Should I go to the guy on the corner who hangs a shingle that he does inspections? What if he drives my van into a work bench? I ended up going to a costly disabled company- never again.
“By helping others you help yourself.” I’m living that statement. I’m teaching disability lessons for free at Arbor Place but in return I get to use their non-profit status. They are willing to let me do all my projects and I will get Infobility established. Then I met with Member’s First who’s also interested in Infobility. They seemed to lose interest when I said I had no “price list.” Money legitimizes everything but then I tried again and sent an outline on my classes. I told them my plan to do programs at Arbor Place, do some wheelchair basketball, and have a chili cook-off. I expressed an interest in doing these things with other non-profits in order to generate income for them and interest in Infobility and he was on board. I have a good feeling about this- things will finally work.
Friday I attended a business expo in my area. I got 87 cards and followed up with people the next day. I got a few polite responses. I realize this is not the route to take, however, there were 2 staff from vocational agencies with whom I had interesting conversations. That is the route to take with Infobility. Since it’s broad, I can create work for individuals who are motivated to do so. I’m eager to receive replies from people who I met Friday.
I went to a program in which people with and without disabilities performed a dance routine. What a wonderful way to promote inclusion! The people said that the program is becoming more recognized. Agency staff in the audience said it helped people with autism focus better on tasks. There are so many benefits from this and I hope more programs like this start. Mostly, I hope funders including insurances, see the value in this venue. Music is a universal language and has been known to really make big strides for people who are largely non- verbal and have intellectual challenges. We must help people without disabilities see the value in this type of program.
“Infobility” can’t help anyone if no one knows about it. Therefore I’m going to have a table to show my literature at the PADES Conference. This is a wonderful opportunity to reach the people who I want to help. Hopefully people will not expect a fancy table displaying pretty pictures photos. What Infobility offers is a decdicated person with a disability, willing to go the extra miles to find solutions or at least hear other people’s issues and then guide them to getting the help they need. I expect it will be a good experience in the end; these events always are.
I completed the application for Housing Development Corporation Board. It would open up many opportunities for me and enable me to help them qualify for grants (having me on the board). My perspective, that of disability, is unique to the rest of the world and it needs to be considered by big businesses. The experience/opportunity would validate what I have to offer, increase my confidence, and generate interest in Infobility. I’m treating it like a job and am taking it really seriously. It is important to have the consumer perspective. I am not one to just listen and not offer any input so hopefully that will not be the case. It would be a worthwhile experience and I would like to get their consumers motivated enough to get involved with issues.
I found a unique way of reaching employers- I belong to a group called “Lighten Up Lancaster.” They are comprised of business people and agency staff. The issue is health and wellness. Lighten Up Lancaster has ongoing programs and meetings of subgroups. Recently I was asked to develop strategies for making the workplace accessible. I came up with ten ideas and offered to include a food awareness component to the program as a whole. Rather than sending my job accommodations information to employers in my roladex. I will do it through this program- it will be a more effective and efficient way. There are always new networking ideas to try.
I volunteered in a gift wrapping booth for an agency. I showed up and sat with the cash box and then distributed literature. Helping other groups with their holidays events is a good means of networking. Chamber Mixers are not the only means of learning what else exists in the community. Events require that the person is social and outgoing. This is not the method for everyone. It is cheaper that attending business groups that are costly and require that you have contacts to share in order to promote someone else.
I just attended a program in which churches are really good resource for employment of people with disabilities. It’s not about faith but the congregants who are employers. A disability awareness program is given then a discussion focuses on jobs. Many churches have offered to work with and find employment a few people with challenges. I never considered this avenue but it seems to be logical. Temple is an environment in which people, who happen to be employers, are not on deadlines and are generally more receptive.
A friend suggested that I put a film of me managing throughout my day, on facebook. At first I did not like the idea- I’m not photogenic. However, I gave it some thought and realized that getting my points across while being in the environment can be powerful. Examples could be 1) opening a heavy bathroom door with a stall which has a low toilet; 2) a salad bar with no ability to reach the other row of food; and wheeling up a amp only to confronted with a step. My first disability presentations were done by film students at NCACC; I showed it so often that I wore it out. This may be a good way to get attention of the business people and others in the community. I developed an outline and now I will contact the local community college. At the Ability Expo in NJ I will ask people with disabilities what issues should be addressed.
People assume they’re helping but they aren’t. The director of my temple insisted I take home a box of food. I could not let him put it on my back seat, it would fall and I’d be trapped in my van. Then he emptied my front seat and pushed it in. I started to back out of my parking space and my manual wheelchair fell to the ground since the man did not close my back door. I don’t mean to seem ungrateful but…
I sent a letter to Invacare explaining my wheelchair problems and the consequences (falling out of the chair and not transferring on the toilet. When I saw that Invacare got 2 federal citations (one for poor quality control) I knew they were responsible for my problem too. Furthermore my surgical supply store who will no longer work with them. Unfortunately they could care less cause they are so big and well known they do not need business. Products they manufacture may be poor and consumers may be upset but they do not advocate so nothing is fixed completely. I WILL get results. I’m “making my mess my message” (Robin Robert’s book title.)
I desperately need new tires on my wheelchair, I am on the rims and so I’ll end up needing new wheels too. I discovered that not only does my old surgical supply store no longer take my insurance, they no longer deal with Invacare! In order for any company to do repairs they insist that you go to where the chair was bought so I’m between a rock and 2 hard places. I called my insurance company and complained, I called four places on their list of accepted companies, now I must call Invacare since they may not accept me going somewhere else. I think they’ll give me no option.
It’s horrific when negativity comes from one’s own parents! They start telling me I should not do something that I know I could. My 1st cousin was just born and there’s a Jewish ceremony for him. I was asked to go and I fully expected to, then my dad gets on the line with why I should not make the long and dangerous drive. I got tired of listening to him drone on and on so I agreed not to attend. Then in an email Mom backs him up and says you can see the baby at Thanksgiving I missed out on 3/4 of my life because they decided I should not do something, then I lost all confidence in myself. Well, you know what? I WILL see the baby.
Last night I went to someone’s house to show the disability awareness video. House parties are an interesting way to spread the word on disability. The person was so thrilled with the dvd that she showed it twice! Growing awareness is literally a step by step process. The husband of the house even made a ramp for me so I could get in the house through the garage! That is an idea- Avon, Pampered Chef, and Disability Dialogue.
I arranged a game last week at a teen center. It was not really a game but an experiential activity. It worked really well (after I was told “NO” about 22 times when I asked to borrow chairs). The director asked to have an actual game which I’m working on. This was not only a good way to reach otherwise uninterested kids but also a health way to introduce inclusion hence “games not guns.” I am not a proponent of just meeting to talk, there has to be a next step to engage these at-risk kids who are more bored than anything else. Once they are doing something fun, constructive, and meaningful, then we can talk WITH them about the usual racial concerns.
Today was a full day of Ted X. All of the speakers were people who helped others less fortunate than she. One lady took in 55 refugee children from Nepal. Another lady created a dress that measured brain waves. A third man spoke about how saying “yes” to an offer without thinking about it really made him grow. That applies to my plight because I keep second guessing myself and limiting myself. I must believe that I can find consumers interested so I’m glad I got involved with the Lancaster Ted X program.
My article on the deaf motorist killed by police resulted in one call. I didn’t even answer it so I guess it was not considered a big deal. I think there is more to the story cause it is not likely that police would want shoot without just cause. However, I tried looking for follow up and couldn’t find anything. I guess the world is on to bigger and better things.
People’s attention don’t last long bit the ones in the situations still have to cope daily.
I learned to look at the flip side because it exists in absolutely every case. One must think of how much worse something can be, then realize that it is not so bad. Soon that becomes an automatic thought; it’s always a welcome one. Everything counts, I learned that from every single one of my mistakes. That’s the only way I could have survived my life. I tell people that I manage but I do just a different way- that’s all it is.
What’s really needed is housing for people with disabilities. Parents are going to die before their kids so if they are sheltered and not given the tools necessary to manage their lives or at least seek the appropriate services they do a huge disservice. There are so many on the “waiting list” that you feel like there’s never going to be enough housing. Supposedly, the state is putting money in this issue but there really is none available and it is extremely expensive and it’s for a lifetime. I’m going to do my best to get Homefields Farm duplicated in other place. The director took a long time to talk with me and actually said I should find some parents who need housing for their adult kids and just work from there. This an idea that should be duplicated more often.
Next week I’ll meet with a parent regarding “Futures Planning” a topic that is all about inclusion and securing a quality of life for individuals when parents (the caregivers)aren’t around. This is something that has been introduced but must really get shared. It has been discussed but presentations are not yet underway. A parent from Ephrata and I will be planning at least one group on this issue. It may have some kinks but they will get ironed out as we go forward. It fits perfectly as an Infobility program.
If I believe someone has done a good job I will write them a formal compliment. On the other hand if I am suffering from someone’s negligence I believe in formal complaints at the very least they should hear their negligence. I hate being underestimated and that happens a lot due to people’s assumptions about me. There are many times when I ask for a manager just so I can say something nice about a person. On the flip side, when wronged, I will go all out. I find ways to get justification most people don’t.
“Vocational Venues” even the title sounds logical. I have a means of helping veterans but I do not have the clout. I met a number of employers seeking to hire veterans. I went to the Veterans Expo and saw so few veterans. I know professionals who run complex job website programs but that is not practical to most. I just seek to put employers in touch with each other with the goal of matching some qualified people with employers to get jobs. There must be a better way than what exists.
Do-It-Yourself Disability” is what I will be sharing with people and professionals. No downloadable attachment is necessary. I want something that is simple and practical. It was suggested that I repackage Infobility. That’s not me. I’ll find people to view the 10 Commandments for Communicating with People with Disabilities” Then I’ll get consumer feedback. No more presentations for employers, focus will be on empowerment for individuals and in the end I will have employers requesting my program. Slow and steady the turtle finishes the journey.
The sun and the wind quarreled as to who was stronger. The wind said “I’ll prove I am. See the old man down there with a coat? I’ll get his coat off quicker than you.” So the sun went behind a cloud and the wind blew and blew till it was almost a tornado. But the harder it blew, the tighter the man clutched his coat. Finally, the wind calmed down and the sun came out smiling upon the kindly old man. Presently, he mopped his brow and removed his coat. The sun told the wind that gentleness and friendliness were always stronger than fury and force. Sometimes the person in the wheelchair is the loudest.
A positive attitude plus technique is the way to achieve success. It is important to have a good attitude, negativity can really cause difficulty. However, all the positive inner messages in the world alone may not be the solution because there has to be an objective component at wok too. If a person is not yet knowledgeable of the way to accomplish something, that is a big problem. Therefore, one must look at the “how” something can be achieved. If a leg falls or a body loses its balance a successful transfer will not happen. On the flip side, once a person can think through a scenario and continue to perfect it by practicing, it will become easier. Attitude + technique = a formulary for success.
A message I’ve been repeating over and over is “you know yourself best/ you’re the expert on you.” I have been learning new ways to do old things, exercising body parts I didn’t think mattered, and trusting people more. 1) I haven’t used a board to transfer in a long time; it’s long, heavy, narrow, and thick so I expected it to be more of a problem then a solution. In some cases it does help. 2) I was sure my legs were useless. Now I see how they do effect my transfers. So exercising them is a good thing. 3) I have managed independently for years. I figured it all out so why use an attendant? I am starting to allow CNA’s & therapists to do it their way, “if you can’t beat them join them.” Sometimes I surprise myself and other.
A population that needs more exposure is veterans. People think of them on Veterans Day and some attend parades. However, the transition to civilian life is rarely smooth and reminders occur 360 days. Life is interrupted by nightmares of battle, physical conditions, or both. There must be a concerted effort for an event that focuses on the issues. I have created an educational play in which people pose as veterans and family members address difficult topics. For example a spouse has a monologue on hardship of paying bills with only 1 salary and dealing with anger issues from the kids. Veterans talk about how hard it is to get a job with constant horrific memories of combat interrupting concentration on job duties. My most important goal is implementation of this project.
The hospital bed is something I realize I must keep even though it makes me feel more like a disabled person. I know that long term it’s best cause I can not rise from a sleeping position without shifting all of my weight to the right side then yanking my head while pulling my arm. It is not an option to do it that way. So what if it’s not advisable by the doctor. Should I just be helpless forever? He said I’m lucky, I could just be a vegetable.
Home health care PT did not show up at my apartment, so I called. I was told that there’s a 2 hour window. I asked why should I have to wait that long? I have plans. The girl who answered the phone just gave excuses that my case has not been processed through the computer yet. Then she finally said that she’ll get a physical therapy assistant. I would love to write an evaluation like none they ever read. Professionals think people with disabilities do nothing all day. That is the way they are taught; people try and try to explain otherwise but it falls on deaf ears.
Assumption of accessibility is often wrong; here are examples. A large parking spot next to an island; a large bathroom stall with a very low toilet; a large roll-in shower with a faucet in the back all make no sense. Often a person with a physical disability needs to really think before they choose something that is considered accessible. I have seen these disasters so many times- especially in hotels. A washing machine stacked above a dryer is impossible to open even if it is a top loader in an accessible apartment. Some places I am told won’t work – do. Workers who make things accessible have no real idea to make the changes, only the person with the challenge knows what’s best.
The RecFest event was amazing and I’m glad that Team River Runner participated. We had most of the pool and 21 people signed up. I learned that someone even presented us with a $300 contribution! I was conducting outreach with vendors. A discovered that a few programs were interested in combining with us to hold events. Easter Seal has a camp for veterans families and they have a camp for adapted sports. They are actively seeking a paddling group to visit, talk, and demonstrate the program. I have a meeting with the development director of Penn State Hershey, it would be gold if we can get them on board- they are really well respected. The Camp Hill CIL is another organization where we can talk and reach new members.
I volunteered to interview six staff in an accounting company in order to determine an ethics in business award. It was a brand new experience completely out of my comfort zone. I kept contemplating reasons to bow out but the entire time a little voice in head insisted that I attend. The interviews I conducted were a collaborative effort by the entire group and I am not the only one writing a report. I will use the experience as an example of the importance of tenacity an exiting my comfort zone.
My trip to Denver happened but not the way it was planned originally. I was supposed to stay at the cousin’s suite however the room has a queen sized mattress. It may be fit for a queen but it’s much higher than my wheelchair seat so I know I can’t transfer, even on a good day. The hotel I wanted would have been better because it will be on a bus route and it will offer breakfast. The person with the disability knows best. After the trip I returned home after staying where I did not want to be. I broke my left armrest, needed a lot of help in the hotel, and did not explore the city the way I wanted. I looked ungrateful; it was a nice trip but never again will I allow my views to be ignored.
I presented to SHRM members about implementing disability inclusion in the workplace. First I did an experiential exercise in which people were asked to assume a certain disability then posed the question, “What type of barriers may there be in a workplace with a disability?” Silence from almost everyone, asking to pretend a disability is scary. Otherwise there was nothing about bathroom doors, nothing about parking spaces. At the conclusion I asked for people’s experiences with inclusion of disability in their work- places. Again there were a few stories but nothing like I expected. A few people came up to the brochure table. A few people had questions. Did everyone feel guilty about there poor inclusion policies?
I just HAD to follow through with an ambulance issue. Three different departments were responsible for the reason why I was upset. First, there was the case worker who insisted I’d be getting transported by ambulance without my wheelchair. Second, the nurse had no intention on putting my clothes on for the ambulance ride. Third, the ambulance workers did not ask for my insurance and said they weren’t allowed nor cared about my wheelchair arriving. I wrote letters to all departments. I had a somewhat productive meeting, the lady was respectful, she knew I knew my rights and said most patients just allow things to happen, and I think she was impressed that I was looking out for others who were going through the same thing. She admitted the need for sensitivity trainings. I never heard back from her but the ambulance bill was deleted.
The Senate revealed their version of the federal budget cuts- they were horrifying. Heath care for people with disabilities and agencies who provide services were once again on the chopping block. Many people who live in the community and require extensive assistance to do so may have to make changes. However, my concern was with the visual reactions by the advocates with disabilities. Individuals were being physically carried out of the building while chanting and yelling about the negative impact it would have on lives. I certainly understand the reason for the distress but they were treated like kids having temper tantrums. We are an intelligent group of people worthy of respect. There are other ways to get a point across, one is testimonials. These are presentations, usually personal, spoken in Congress that explain the importance of services being cut.
I’ve wanted to produce a video on disability. Years ago I got college students in the broadcasting field to create a simple film. It was effective and an interest way to promote disability awareness. Recently, I met a documentary film producer who suggested I consider creating something more sophisticated but on disability awareness to enhance my programs. I would have a few recognizable agencies to partner with first, then start a Kickstart Campaign to really get things moving. The Ten Commandments video really needs to be updated but the concept is fine. The themes would be inclusion in the areas of employment, socialization, psychological, community, and family. I could definitely design something, perhaps I can interest a few college students to produce it, like I did in the past. Communications classes still require student projects.
I met an auto mechanic who really wanted to install hand controls. I called a Mobility Works service man. He explained the process and it was complex as I suspected. You get a job as a technician at a dealer and then get trained in each modality separately. I asked the likelihood of getting hired and discovered it depends how far the person is willing to travel. The closest place in this area is in Harrisburg and they rarely hire. I called the individual back and he was not deterred. I don’t want to sound too negative about this job because I consider these people to be surgeons. It’s just that I worry the whole field will be phased out. If OVR doesn’t have the money to pay for the adaptation installation there won’t be much business from individuals. However, perhaps these skills could be used for “the car of the future?” Then it may get funded for the general society.
At the Science Factory I arrange for disability experiences for the kids. This is quite a unique way to teach disability awareness. I had a poster of people with disabilities doing all sorts of “normal” things- getting married, dancing, parenting, etc. Then a paper on deafness, blindness, and other challenges. Kids interested in trying the manual chair were encouraged to try it. Everyone learned that sitting in a wheelchair doesn’t make a person different, everyone is the same on the inside. This was a good anti-bullying class.
The tag line for Infobility is “sharing information on disability issues.” I’m testing the “sharing” part. I’m sending my Infobility to all of the members of the Spinal Cord Peer Support groups across the country as well as Independent Living Centers in the USA. For the CIL’s I’ll make calls I should get some suggestions and replies. It will be a lot of work but who knows what will happen. I am also going to try getting some college students involved in disability awareness. I did and I’m always surprised by the (non) reactions.
I attend a monthly program in which case studies seek non medical solutions. I am glad that the medical field is considering non-traditional solutions. Many people would be healthier if their mindsets were more positive. It’s natural that mental and physical health go hand in hand. Unfortunately, this method is not the norm though it can be more effective. To me these perspectives we offered are a just logical.
I designed a toilet seat inside my manual wheelchair using a cool whip dish. That helped years ago but that wouldn’t help at a local country music festival. I opened the door and was horrified that there was absolutely no space for a wheelchair to get inside! It took 15 minutes to get approval to visit a toilet inside a building on the grounds. The police, security guards, and staff were completely perplexed why I could not use what they had. I wanted to show them but no one was interested in observing my explanation. My concern was others in my situation. I find it appalling that the company who designs these useless things make tons of money and have no interest if they can be used.
Most people who care about disability either experience it themselves or someone in their family does. Our constant advocacy- sharing testimonials, holding conferences, presenting facts and data of proof should be sufficient for decision makers. We are the largest minority yet the lowest on the totem pole. Attendant care will be impossible to receive, unless the people who need it live in institutions. Tax incentives for employers to make accommodations will cease to exist or become too complicated to honor. So how can “Employment First” be implemented? How can we get jobs if we can’t get to the job? I long believed that we need to work together and stop fighting individually.
I went for a wheelchair evaluation. This time the evaluator wanted me to have a chair that reclined, leg rests that lifted up, and a head rest. I would barely get through most doorways since it would be so big. She then brought out a chair with small foot plates, a totally different structure than what I’ve had, a reclining option, and legs that extended. She said I needed to adapt to the recent wheelchair changes. WHAT? I’ve adapted to everything in life on a daily basis. My needs are extremely basic; I need to get through doorways, inside bathroom stalls, and into the e-z lock for driving. It’s not asking for much yet she seemed to think I was picky and inflexible.
I attended a grant meeting on an RFP entitled “Employer Centered Employment.” I have an idea about the employer being the central figure- not consumer. It’s been done the opposite way unsuccessfully so why do we continue? I learned that the Disabilities Council previously cancelled the employment grant when no one offered better ideas. Does anyone (agency) actually “get it?” I know that some do, but mostly they mostly pretend. I hope they don’t give up but with fewer dollars it becomes less and less likely.
It important to belong to community events as a way for you and others to learn and raise awareness just by showing up. Sometimes the group is not receptive so it’s best to just move on. I was in such a group, I was welcomed and spoke twice. I developed a power point and spent 30-45 minutes talking on the benefits of hiring and workforce engagement. The beginning was an activity and the conclusion was comments. The participants hardly made any comments. I recalled the experiences I had as a placement specialist and job coach. The moderator made an inappropriate joke and I felt really uncomfortable. Was it too much to expect people to take me seriously?
They say “only look behind if you want to go that way.” They also say “you must learn from history in order not to repeat it.” So which is it? It’s both. To really grasp a concept and to ensure progress you look behind at past mistakes then look ahead and learn from them. What went wrong then concentrate on what’s needed to attain the goal. Another strategy for reaching success is to divide the goal by creating more manageable portions so success is attainable rather than overwhelming. Don’t just look at the big picture but see smaller goals along the way; it’s all about the journey and make a mental note of things encountered. Once you reach 1 objective, celebrate then move on to the next goal. This works when transferring yourself into bed, interviewing for jobs, or raising funds.
I saw my 3 minutes of Live with Kelly and Ryan Wednesday and noticed a lady in a wheelchair was the chosen dancer for the day. It was really nice to see how far society has come. I went to the “Live” studio one day and sat in the audience. She was pretty and just doing something she probably does regularly. I read a book that gave 50 ideas for improving one’s life. Some ideas seemed logical and simple such as “Control Your Clutter” and “Balance your Books” and Get Your Zzz’s.” Other ideas such as “Just Say No” and “Heart Healthy Eating” are not as easy. Typical ideas can work successfully for people with disabilities also. We need not dwell on our differences, I think others do that and impose their unnecessary concerns on us. Just having fun and “showing up” is all it takes. There’s no reason to hesitate doing that dance.
There are only 7% of the population left who experienced the second world war. In order to preserve this time period we must find ways to expose future generations and one successful way is to hold a veterans expo and cafe. Some of the activities at the expo include a parade of military vehicles, reenactments of battles and skirmishes between the French Resistance, Allied and German troops around the battle-scarred French Village, over 1,700 WWII military and civilian re-enactors, and dozens of combat and support units. As a guest said “This is one of the finest WW2 shows on the east coast. Plenty of re-enactors, vintage aircraft, WW2 veterans, big band music. If you close your eyes and let your imagination work, you’ll be back in 1943.”
One concern for employers is where to find qualified people with disabilities who are seeking employment. They are not likely to be locate at a networking function or a job expo. The first type of event is very uncomfortable for people who use wheelchairs since everyone is standing around and no one even sees you, sitting down means you are shorter than everyone else. Partnerships are interesting ways to find job seekers as well as learn about agencies who serve people with disabilities. They could create interesting fundraisers together and educational workshops for the community. The agencies can also present trainings in their workplace. This can all ultimately lead to employment opportunities.
What’s the secret to living a life with a disability? How can I take out the stress in my life? Two words –plan ahead. I do this when planning a trip or going to the corner store. For example I have an appointments coming up but I needed to make sure I could enter the building and the restroom. I called to ensure that the ramp would be ready upon arrival so I wouldn’t be late for the meeting. As suspected it will be a process to get the restroom but I know the manager of the event will appreciated that I thought ahead to make sure everything goes smoothly. Thinking ahead is the most effective and positive way to handle most every situation and enables me to enjoy the activity more.
A serious challenge veterans experiences re-entering civilian life is employment. Some employers judge applicants negatively if they have military backgrounds. These traits are actually positive vocational qualities an employer should be seeking. They include a strong work ethic, ability to work under pressure, and collaboration. Unfortunately PTSD is a barrier that makes life harder. There is data that shows the benefits of veterans in the workplace. Society needs more awareness of the plight of the veteran and veterans need a tool that will empower them, and give them the persistence to succeed. Hopefully the presentations will increase employers understanding and awareness.
I attended a conference in mental health and a few talks covered veteran health issues. A set of parents had a son who died from CTE chronic traumatic encephalopathy. It is often diagnosed as post traumatic stress and can not be detected until after death. I met a person from NAMI who runs the York office of York office. The lady acknowledged that Lancaster should have more programs for veterans and their families. I offered to help the process and in time it will come to fruition. Team River Runner, the adapted kayaking program for veterans, will continue to generate interest. It is slower in some chapters than others.
Christine Lynskey, Manager of Friendly’s and Michael Wolfe, Store Manager of Golden Corral both on Lincoln Highway in Lancaster are among the 1000’s of restaurant staff serving our veterans free meals in honor of Veteran’s Day. November 11 traditionally features clothing store deals but more valuable than that are free meals. That is because many of the people who fought for our country now have $0 to their name. There have been more than 6,000 veteran suicides each year (Sept. 2018 Nat’l VA data). Many feel there is nothing to look forward to but loneliness and psychological and physical pain.
There should be more politicians who have disabilities and there should be more citizens with disabilities interested. The disability population is low on the proverbial totem pole so it’s not front and center. Unless a person has disability in their family it is rarely a thought. As a result, there’s very little teeth in the law. Federal funding is not supposed to be approved for companies unless 7% of the employees have disabilities but that mandate is not followed nor enforced. Vocational agencies try to make a transition and some agencies so Others which have sheltered workshops shutting down. When there are many people employed in the community there is a need for more job coaches.
The resolutions many people make are about dieting and exercising; often they are the two parts of a bigger one- living healthier. A few weeks ago I switched wheelchairs and had no choice but to gain strength. Usually it comes naturally with transferring but this time is different. Because I must use my arms to get around I got concerned; I’ve lost a ton of muscle tone in my arm muscles. I’ve been watching General Hospital episodes on a podcast and lifting weights. Now I listen to political news, podcasts, new country music, and General Hospital and exercise each time. I know it helps somewhat, it certainly can’t hurt. I actually look forward to my exercises and my transfers because I like the shows. My attention deficit disorder, which makes me unfocused is actually a good thing.
It is now becoming super easy to end a pregnancy and this can practically eliminate our population. An increasing number of states are allowing abortions at any month. They say that women must have a doctor’s approval first but that is a minor deterrent. As it is, technology is so advanced that a slight problem with a fetus can be detected and that is enough of a reason to undergo the procedure. Imagine if a person can remove a baby for any reason! Many women who decide to take the pregnancy full term are grateful they changed their plan. I wish our population was strong enough and united enough to do something about this but I am not going to spend time on a battle that does not have a strong back up. I hope that people will see the ramifications of this present government.
I was eager to see “The Upside” because I knew that I could use something from it for my Disability Dialogues programs. Writing an opinion article got no response. Now I am planning a speech for a rotary club on Wednesday and I’m thinking of the most effective way. I like that a movie can promote the importance of disability inclusion. Many people were entertained watching Kevin Heart and Nicole Kidman relate to the character with paraplegia. Actually that wasn’t the only benefit the audience experienced, they were educated too. They saw how many “normal” people communicate with those who look differently. It is not something people realize how they react and how it looks and sounds. The man in the wheelchair was actually a successful billionaire. I wonder how people would react to him if they knew about his bank account? People automatically assume that they are broken on the outside so they must be broken on the inside.