Let’s have a written disability dialogue.
“Alone we can do so little; together we can do so much.”
June 30, 2012 Artswheel is coming together. Since it’s part of Artswheel which is a small festival that happens every Thursday it’s already got an audience. I was not getting professional representatives to sit at the table so I altered the event to focus the entire event on a game of facts. There will be a picture of a wheelchair and each spoke will have a color corresponding to a category. They include 1) disabled artists, 2) disabled athletes, 3) disabled musicians 4) Gardening and cooking for disabled, 5) Americans with Disabilities Act. 6) employment successes, 7) adapted sports, 8) facts vs. myths. I connected with someone who paints and happens to have a visual impairment.
May 6, 2021 I discovered the value of the United Spinal Association. I’ve spoken to the members on and off but thought it was for people who had accidents. This time I took a significant amount of time reading the comprehensive website. There are zoom meetings on a daily basis meant for all groups including siblings, caregivers, parents, families, children employment, nutrition and more. Every state has a chapter, Pennsylvania used to have 3 but now they are down to 1. Therefore, I’m going to start one in Allentown. I expect to meet and help many new people.
April 19, 2021 I’d like to provide podcasts. I created 2 but do not want to be on film so I continue to try to find a speaker. One is on empowerment– coping with disability. It’s based on my booklet which has 6 sections that discusses suggestions for (psychological, social, vocational, educational, community) issues. If people are interested in the booklets there are thought provoking questions in each area. The second is on employment – hiring people with disabilities. This includes strategies and reasons to consider welcoming and preparing employees. It is also based on my booklets. Both programs are filled with factual and practical information.
April 10, 2021 If you want something done right, do it yourself or complain to the right people. I wanted to wheel my chair or take a bus from the rehab home. “Oh no that’s not safe” is all I heard from the doctor, case manager, nurses, and parents. Eventually I gave in to the $70/1.2 mile ride which arrived 20 minutes late. I accepted that, I must choose my battles carefully. I directed the driver to my apartment, she let the lift down and I got off. I looked around and realized there was no way to get up the sidewalk since the lift was in the back of the van. I wheeled on the busy road to the end of the block where there was a curb cut. I ask you this. Was THAT a safe experience? I wrote a letter, as if I was my mom, and sent it to the caseworker and CEO of the van company. I will be getting my point across.
April 9, 2021 This will be my final week of ACRE my certification course. I really enjoyed it but I only learned a few things. It really re-energized me even though it has been awhile since I had formal employment in the vocational rehabilitation field. I remembered a lot more than I thought I would but unfortunately placing people with disabilities in jobs may be more competitive than it was. I became interested a lot more interested in reaching employers and others to share awareness and decrease the stigmas. I learned skills to address a disability during a job interview and programs to help an individual to identify skills and interests. I am more determined than ever to put my bachelors & masters degrees to work. it won’t happen unless I am tenacious (determined).
April 1, 2021 Bitty & Beau’s Cafe is being established in the area!! I am determined to get involved doing outreach. I found a big local company that may be interested in serving as a supporter for the development process. I called MD to receive information on connecting with their local contacts; there must be someone. I’ll continue to pursue this project. I knew this type of job opening would be a likely opportunity to people with disabilities now that 1000’s seeking jobs due to Keystone Pipeline cancelation, ongoing border policy, store closings from COVID. It may not be seen as the ideal community employment situation for people with disabilities but it’s a great opportunity right now.
March 20, 2021 I’ve been taking a 40 hour rehabilitation certification course. I think it was a good move for me cause I haven’t worked directly in the field for awhile. I am discovering that what is needed is awareness for employers and much more extensive job analysis for consumers. Therefore, rather than driving all over for job development, I should work as a consultant. I can cover both sides (awareness and empowerment) at once. I need extensive marketing to reach people with disabilities and the market is tougher now due to the pandemic. It’s time to do what I am most comfortable.
March 15, 2021 “Determined 2 Heal.” I hope the founder will accept my booklet under his daily living category. I spent years in an effort to reach people and now I don’t care if I receive credit or not. I just want my solutions to be available to people who could use them or share with others with challenge I discuss. I also want to create a video log filled with important information addressed in a “fun” way. I sent my ideas to someone who has a disability, a v-log with many followers and would be a great resource for sharing.
March 10, 2021 Life is a puzzle but not from a box. You think something will be a simple request and instead it is a complicated undertaking. I requested to see my wheelchair evaluation of which I have a right to see. I was told to contact the medical records department of the rehabilitation hospital. It would not even be there, the report is not yet complete! After three calls I finally got through to the
department director said a doctor, will get a copy.
March 8, 2021 I’m sure my ability to adapt as a zoom meeting could be useful to another an d vice versa. However, I don’t know how to reach my audience except to CIL’s. Recently this month I have found solutions for reaching the contents inside of the freezer, picking up a book at the far corner under the bed, sitting myself up in bed, opening the garage door, and more. I guess that’s why people have attendant care but it’s much more meaningful for me to figure it out myself.
March 1, 2021 requested a roommate since I have an extra private furnished bedroom and bathroom and huge closet. It would be a good idea for someone else to be around when I do my transfers. I put ads in asking 1/2 the cost of the place … but I mention the wheelchair …but state that “I drive everywhere.” I still say it’s a deterrent people think I need them to be my nurse. Why do I believe that? No one has replied yet apparently everyone needs a nice place cheap.
Feb 20, 2021 I moved into an apartment in the city of Allentown Pennsylvania. The place is really nice but the location is not. I am in for an experience because there is outside noise throughout the day. The management is wonderful and I’m planning to help them participate and conduct workshops on accessibility. Everything works for me accept the garage underneath. There must be a electronic device used to open the parking area but it is extremely steep. I refuse to do it because my balance is bad. If I stop to lean sideways my balance may not be willing to agree. Eventually I’ll be allowed to use the other location which is all flat. Till the I must get help because I choose safety over standard methods.
Feb 10, 2021 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.
Feb 8, 2021 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.
Feb 2, 2021 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 firstname.lastname@example.org Thanks.
Jan 30, 2021 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.
Jan 27, 2021 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.
Jan 15, 2021 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.
Jan 13, 2021 My parents are too good at the “job” and that is not helpful. In the short term that is easier for me. However, I must continually force myself not to take the quick way out. Managing may be difficult and, it takes up a lot of my energy, but it becomes easier in the long run. Why would I want to be dependent? Many people disagree with me but there are a few like minded people. It makes me a less kind person sometimes. Refusing help upset many well meaning people i.e. friends.
Jan 10, 2021 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!
Jan 6, 2021 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.
Jan 3, 2021 I will be giving a talk on self-advocacy as a zoom meeting. 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.
Dec 20 2020 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.
Dec 19, 2020 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.
Dec 20, 2020 “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.
Dec 18, 2020 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.
Dec 7, 2020 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.
Dec 1, 2020 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.”
Nov 30, 2020 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.
Nov 15, 2020 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
Nov 2, 2020 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. 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 help.
Oct 30, 2020 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.
Oct 13, 2020 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.
Oct 3, 2020 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 but there’s always a double standard.
Oct 1, 2020 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.
Sept 30, 2020 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.
Sept 18, 2020 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.
Sept 3, 2020 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.
Aug 31, 2020 ‘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 establishments 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.
Aug 28, 2020 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.
Aug 17, 2020 Awarenessfor temples is important since many are inaccessible. Write 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.
Aug 10, 2020 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 whole grains.
Aug 1, 2020 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.
July 30 2020 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.Dec 18, 2020 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.