Returning Fire on Parkinson’s Disease
Returning Fire on Parkinson’s Disease
David Smith is a strong believer that “guns are not all bad, they are just a tool.” David has been around guns his whole life and was taught proper usage and safety at a young age. Going to the range and competing in competitions was always something he loved and knew he would do the rest of his life. But one day, at age 38, David was diagnosed with Parkinson’s disease and his life changed forever.
What is Parkinson’s Disease and its Symptoms?
Parkinson’s disease is a neurodegenerative disorder that affects dopamine-producing neurons in a specific area of the brain known as the substantia nigra. This results in a progressive loss of movement and coordination since dopamine is used by the body to pass signals between neurons. Essentially, the brain’s delivery system for muscle movement signals is shut down or extremely limited. Over time, the symptoms worsen, as more and more dopamine-producing neurons die until the individual is incapable of controlling his or her movements. Typically, this progression is slow, acting over a duration of time, but for some can progress at a much quicker rate. Symptoms of Parkinson’s and the extent of them can vary from person to person. The most common symptoms consistent with the disease are as follows:- Tremor: mainly taking effect while at rest
- Bradykinesia: slowness of movement
- Rigidity: stiffness or inflexible muscles, most commonly occurring in the limbs
- Gait: causing movement to be limited to small shuffling steps and the inability to keep balanced
David’s Story
David was only 38 years old at the time he was diagnosed with Parkinson’s disease and since then has been doing all he can to fight back and regain his independence. In the beginning, David was confined to a handicap scooter to help him get around. He reported he was in the scooter because he could walk to his mailbox outside but any further and he would have a frozen episode and become unable to move. As time went on the shakes increased and David began looking into other forms of treatment. Just as most individuals affected by the disease, he was prescribed a set of medications to help him with his various symptoms. But after some time, he realized the side effects of the meds were worse than his symptoms. David wanted to find a way that would help him improve and not just supplement with medication. He read about a study on dance and the effects it has on helping with Parkinson’s. When attending the study, they had him listen to lectures about the science behind it while others got to dance. What stuck with him the most from the lecture was “neuroplasticity”. Neuroplasticity is the brain’s ability to reorganize itself by forming new neural connections throughout life. Essentially, it allows neurons in the brain to pick up the slack for damaged or diseased cells to help the body adapt and heal itself. After learning more about this, David immediately signed up for the dance portion of the study. But unfortunately, he did not meet the physical and cognitive measurement requirements and had to drop out. As David says, “the only thing left for me to do was shoot”. David went to talk to some people at the NRA and realized when he went to aim his gun, the shaking stopped. Since then it’s all he does. David claims the shooting helps him not only with the shaking but also with his hand-eye coordination and keeping him physically active. Additionally, “Parkinson’s has an effect on memory, and I know I’m not as sharp as I used to be”, says David. He further explained, “when shooting in competitions and courses, I need to take out 40+ targets as quickly as possible. So remembering where the targets are strengthening my brain, physical ability, and clarity as well as my self-confidence.” He never expected it to go this far, he originally started just to help himself and to try to enjoy his life. In an attempt to get himself better and to minimize his medication, David began using “Gun Therapy” daily, to help him improve his ability and to fight back against Parkinson’s. The way he saw it, by taking in synthetic dopamine it only synthetically fixes that broken pathway and in his belief the pathway will never rebuild itself or improve. Now, David spends 90% of his day shooting, the only thing that helps him truly feel himself again and improve his condition. “When I measured my shakes at 25 yards out, my shots would travel 6 feet of shake from my aim, but when I go to pull the trigger my arm steadies and I am on target”, David said. Before Gun Therapy, he was taking roughly 25 pills a day and last year, he successfully got himself down to only 6! An incredible accomplishment, only to be topped by his continued ability to win a number of shooting competitions, despite his condition.What’s next for David?
David has many goals in mind. He wants to spread the word of Gun Therapy, as well as spread awareness to help people understand not only Parkinson’s but all diseases/conditions impacting people around the world. However, next on David’s agenda is competing in this years World Rifle Shoot in Sweden. This competition is one of the most competitive of them all! David explains it as being the step above the Olympics! Only 24 people are accepted to enter and over 20k-30k competitors try every week to qualify. David is extremely excited and ready to get after it, bringing Gun Therapy and the Parkinson’s Shooter to the global stage. Training every day, firing over 100,000+ rounds a year, David is ready to take on the competition and hoping to land an ammo sponsor who can help him spread his Gun Therapy message and show the world, guns are not bad but actually useful tools for anyway. David is a man who refused to quit and instead chose to return fire on his diagnosis of Parkinson’s disease. Reclaiming his freedom and keeping himself as mobile and fit as possible, David doesn’t plan on retiring from competitions or shooting any time soon. Instead he only has bigger hopes and greater dreams! Dreamscape Foundation wants to wish David luck this August as he competes at the World Rifle Shoot in Sweden and hopes he shows the world what the Parkinson’s Shooter is all about! If you wish to follow and support David, please follow him on Instagram and Facebook. Next »« PreviousHannibal YMCA’s Dedication to the Community
Hannibal YMCA’s Dedication to the Community
Located at 1 YMCA Drive Hannibal, Missouri 63401, the Hannibal YMCA is committed to the wellbeing of their community. They offer the community local programs focused in Youth Development, Healthy Living, and Social Responsibility. These programs are for any age group (youth, teen, and elderly) and consist of Aquatics, Sports, Wellness and Community Groups. So, whether you are looking for different physical activities, sports programs or just want to get out and enjoy all the great activities your community has to offer, this YMCA is for you!
Hannibal YMCA’s Dedicated Programs
The Hannibal YMCA was established with one main goal in mind; to help strengthen the total person so everyone can reach their highest potential and enjoy an increased well-being. They work to achieve this goal through there three primary program categories. These include Youth Development, Healthy Living, and Social Responsibility.Youth Development Programs
Their Youth Development programs include child care, swimming/sports/play, as well as camping trips. The Y understands that families have enough to worry about as it is and don’t need the added stress of finding quality child care. Their child care programs are set up with more in mind then simply looking after your children. They focus on the development of the kids by providing a safe place to learn foundational skills and to build new healthy friendships. As for their sports and recreational activities, they take the time to teach kids about the importance of becoming and remaining active throughout their lives. According to the Y, “Whether it’s gaining the confidence that comes from learning to swim or building the positive relationships that lead to good sportsmanship and teamwork, participating in sports at the Y is about building the whole child, from the inside out.” The Hannibal YMCA believes highly in nurturing the potential of every child and teen, to help them learn their true values and abilities!Healthy Living Programs
The provided Healthy Living programs go above and beyond what you would typically expect. Their wellness programs include different sports/recreation, physical fitness classes and facilities but also mind and spiritual strengthening programs. Additionally, they offer family time activities to help families grow greater connections and bonds. The wellness programs range from educational activities to promote healthier decision making, to programs supporting physical, intellectual and spiritual strength. The Hannibal YMCA knows that true well-being doesn’t only come from a clean diet or physical exercise. But instead, lies within strengthening the mind, body and spirit as a whole!Social Services and Volunteer Efforts
According to the Y, “We know that when we work as one, we move people and communities forward. That’s why we are committed to providing support to our neighbors and opportunities for kids, adults and families to give, join in or advocate in the name of stronger communities.” In order to bring the community together as one, the Hannibal YMCA orchestrates community service projects, donations, volunteer efforts and social services. A community is like a family. You all live in the same area and understand the needs of the people around you. Together, a community can achieve almost anything but when divided, can achieve nothing. Coretta Scott King once said, “The greatness of a community is most accurately measured by the compassionate actions of its members.” When we look out for those around us and show love to those in our community, it becomes contagious. Little by little, everyone starts to benefit and the community as a whole grows closer and stronger. Next »« PreviousBest Ways To Adjust To Your Disability With Age
Best Ways To Adjust To Your Disability With Age
According to the Centers for Disease Control and Prevention (CDC), in 2015 there were roughly 53 million (1 out of 5) adults in the US living with some type of disability. In a more recent study, the CDC concluded this number has grown to over 63 million (1 out of 4) adults in just 3 short years (2018). Whether it be physical or mental, it is clear the number of people living and aging with a disability is growing year after year and more and more people are looking for answers. This article is intended to provide important information and sources on:
- Statistics and Medical concerns for people aging with a disability
- Functional Problems associated to aging with a disability
- Current actions being taken towards helping those with disabilities
Medical Problems
Studies have shown the average person normally wouldn’t experience medical or functional issues directly related to aging until at least 70-75+ years old. However, it has been shown that people with a disability tend to develop these issues 20-25 years sooner! These same individuals are also 3-4 times more likely then their nondisabled peers, to develop secondary health problems. These include but are not limited to Diabetes, Cardiovascular Disease, Fractures, and Osteoporosis. These are due to a number of different aspects depending on the type and severity of the disability.Functional Problems
Aging with a disability is hard enough as it is and with the addition of functional problems can become over baring. Regardless of the original disability, it is common for individuals to begin experiencing a sudden weakness or loss of strength, decreased endurance, limited range of motion and in some cases an increase in pain. As these symptoms progress, it can become inherently difficult to complete basic daily tasks such as feeding or dressing oneself, shopping, or getting around from place to place. Seeing as many people with disabilities can develop these at an earlier age (40-50 years old), employment and being able to complete the necessary tasks associated to your career can also be affected. Between at home care, physical rehabilitation and permanent disability, people with disabilities now more then ever, can get the help they need to support themselves and their families. It is important for anyone struggling with a disability to conduct some research of your own, because everyone is different and so are their disabilities and needs.Current Actions Around the World
Today, doing all we can to help those struggling with a disability has become a global responsibility. In 2006, the United Nations adopted the Convention on the Rights of Persons with Disabilities (CRPD). According to the UN the Convention, “takes to a new height the movement from viewing persons with disabilities as ‘objects’ of charity, medical treatment and social protection towards viewing persons with disabilities as ‘subjects’ with rights, who are capable of claiming those rights and making decisions for their lives based on their free and informed consent as well as being active members of society.” It highlights the legal obligation to promote and protect the rights of persons with disabilities both in society and individual development. Some key topics identified by the Convention are accessibility, living independently and being included in the community, personal mobility, and health. In addition to the CRPD, the UN has also implemented the Sustainable Development Goals (SDGs) of the 2030 Agenda which specifically references ending poverty, good health and well-being, decent work and sustainable communities, for older persons and persons with disabilities.Striving to Understand
An associate professor of physical medicine and rehabilitation at Michigan Medicine and a member of the Institute for Healthcare Policy and Innovation, Michelle Meade, Ph.D., once said “When we work in a health care system, we interact with patients with disabilities, but we don’t always understand what it’s like to live with a physical disability”. In this statement, she expresses the notion that only those living with a disability can truly understand what they are going through. No matter how much you study or how much time you spend with people who have disabilities, you will never know what it is like to walk in their shoes, but we can lend a helping hand. In a world where people are living longer and new scientific/medical breakthroughs are happening regularly, we must remember to continue taking strides towards making life better for everyone, regardless of our own abilities. Next »« Previous11 Facts You Should Know About LHON
11 Facts You Should Know About LHON
No one can prepare themselves for a life altering disability. The best you can try to do is gather an understanding of what is going on with your body. We’re glad to share this information and to help anyone going through the condition, with these 11 facts about Leber Hereditary Optic Neuropathy.
Onset effects Young Adults
When Dreamscape founder learned of his disability, he was only 16 years old. Often, we listen to similar stories of those effected by LHON. People usually develop LHON mid-late teens, and is described as loss of sharpness and a fading of color vision. The vision loss mainly affects central vision, which is needed for tasks such as reading, driving and recognizing faces. In a small percentage of cases, the central vision loss can improve; but in most cases loss of vision is permanent. It’s only after a year or so living with the disability, is when people fully adapt to their new surroundings. With the help of accessible technology, and charities like Dreamscape Foundation, you too can find the freedom you are looking for!LHON is Painless but Quick Acting
You can rest a bit easier to learn that LHON’s onset is a painless one. The experience on the other hand, can throw quite a curve ball. It only takes a few moments for the central vision loss to kick in, leaving only peripheral view. We often hear stories of rapid blindness, usually after rubbing ones eye. In some cases, one eye will start to be effected before the other. The other eye’s condition soon worsens, at an average of 8 weeks after the initial onset. LHON is still has a cloudy reputation, as most people have never heard of the hereditary disability. It’s a good reminder to know that most of the visually disabled are not 100% blind! This can be a common misunderstanding, due to outdated stereotypes of the blind.LHON is Transmitted by the Mother
LHON is passed down to children primarily due to mutations in the mitochondrial (rather than the male nuclear) genome, and only the egg contributes mitochondria to the embryo. Mitochondria constantly convert energy locked in our food into energy that the cell can use, and are small sub-units that reside within the cell. LHON follows a mitochondrial pattern of inheritance, also known as maternal inheritance. Only egg cells contribute mitochondria to a developing embryo, therefore only females can pass mitochondrial conditions to their children. Fathers affected by LHON or carrying LHON mutations do not pass the condition to their children.Discovery of Disability
This disease was first written and described by the German ophthalmologist Theodor Leber in 1871, only 31 years old at the time. In said paper, Leber described 4 families in which a number of young men suffered abrupt loss of vision in both eyes either simultaneously or sequentially. This disease was initially thought to be nuclear linked but was subsequently shown to be mitochondrial.Other Useful LHON Facts
- LHON affects both males and females, but more commonly found in men.
- The birth prevalence of LHON is approximately 1 in 50,000 people.
- More than 50% of men and more than 85% of women with a mitochondrial mutation will never experience vision loss.
- Without a known family history of LHON the diagnosis usually requires a neuro-ophthalmological evaluation and blood testing for mitochondrial DNA assessment.
- “LHON Plus” is a name given to a rare variant of the disorder with eye disease together with other conditions. (Many cases of LHON plus have been comparable to multiple sclerosis because of the lack of muscular control.)
- In 1988 Wallace et al. identified the nature of the first known causative mutation (50-70% of all LHON cases).
- The other two mutations known to cause LHON were identified in 1991 (8-25% of all LHON cases) and 1992 (10-15% of all LHON cases).
25 Asperger Syndrome Traits and Treatments
25 Asperger Syndrome Traits and Treatments
Asperger’s syndrome is a condition considered to be a high functioning form of autism. It is on the autism spectrum, which may sound more intimidating than it actually is. While it is on the spectrum, many people are able to function in social settings with Asperger’s without you even knowing that have it at all.
Positive Asperger’s Traits
- Remarkable focus and persistence
- Aptitude for recognizing patterns
- Attention to detail
Potential Challenges
- Difficulty with social interactions
- Restricted interests
- Desire for sameness
- Hypersensitivities (to lights, sounds, tastes, etc.)
- Difficulty with the give and take of conversation
- Difficulty with nonverbal conversation skills (distance, loudness, tone, etc.)
- Uncoordinated movements, or clumsiness
- Anxiety and depression
Cognitive Behavioral Therapy
- The idea behind CBT is to change your behavior by adjusting the way you think about things. According to CBT “Negative thinking leads to negative actions”. “Cognitive-behavioral therapists teach you to get some separation from your thoughts,” says Dr. Bea. “You can acknowledge them, but you let them pass without letting them control you. In that way, it is similar to mindfulness meditation.” CBT can be beneficial to people of all ages.
- Here is a quick article from Psychology today on how Cognitive Behavioral Therapy works.
Social skills training
- For children diagnosed with Asperger’s, social skills training can be a very useful tool to help them better integrate into schools and other parts of society. The goal of these training sessions is to help develop skills like empathy, social queues, and speech to better help them succeed as adults. Here is an article that helps illustrate the benefits of social skills training, as well as some tips for parents of children with Asperger’s.
Antidepressants/ ADHD Medications/ Anti- Anxiety
- While there is no medication that “cures” Asperger’s, there are medications that can help you cope with the symptoms. Some doctors may prescribe Antidepressants or ADHD medications depending on the person’s symptoms.
- While there can be many benefits to these medications, in order for a Dr. to prescribe them the benefits must out weight the risks. Some risks may include, liver damage or other internal organ damage, as well as fatigue and drowsiness.
- Medications such as anti-anxiety medications can be great for people with Asperger’s. Often time these people experience high anxiety or stress in many social settings such as large crowds or even classrooms. Medication can help them to remain calm and feel more comfortable in these situations.
Social Groups
Social groups and support groups can be a great way for people with Asperger’s and their families to connect with one another, as well as other people who are in similar situations. There are many different kinds of groups available across the country. Some of these groups are more activity based, with the goal of gathering people of common interests in order to stimulate social skills. Other groups are more support based. These kinds of groups can be great for the families. Often times families feel that they have don’t have anyone to confide in, or know how best to help their family member.Other treatments
- There is a wide range of other treatments for people with Asperger’s.
- Applied behavioral analysis (ABA)
- Anger management
- Horse therapy
- Art or music therapy
Discrimination Against the Disabled
Discrimination Against the Disabled
Many of us deal with or at least witnessed disability discrimination. Most of the time, it’s for reasons no one can control. Did you know there is a law that makes this focused abuse illegal? The U.S. Equal Employment Opportunity Commission requires an employer to provide reasonable accommodation to an employee or job applicant with a disability, unless doing so would cause significant difficulty or expense for the employer (“undue hardship”).
Checking the Facts
It is illegal to harass an applicant or employee because he has a disability, had a disability in the past, or is believed to have a physical or mental impairment that is not transitory (lasting or expected to last six months or less) and minor (even if he/she does not have such an impairment). Harassment can include, for example, offensive remarks about a person’s disability. Although the law doesn’t prohibit simple teasing, offhand comments, or isolated incidents that aren’t very serious, harassment is illegal when it is so frequent or severe that it creates a hostile or offensive work environment or when it results in an adverse employment decision (such as the victim being fired or demoted). The harasser can be the victim’s supervisor, a supervisor in another area, a co-worker, or someone who is not an employee of the employer, such as a client or customer. With this information, it is key to point out and combat signs of discrimination in the workplace.No Time for Pity
I spoke with Dreamscape Foundation founder, Joseph Sehwani, about the types of discrimination he has dealt with. Being only 16 years old when dealing with his onset of Leber’s Hereditary Optic Neuropathy (LHON), the founder has a unique yet familiar brush with discrimination. “When I was diagnosed with my disability the first thing I noticed was the different ways people started to treat me. It was difficult taking on the obstacle of blindness, but even more difficult to see people in my life unsure how to behave around me.” Sehwani states that “I felt as if my peers looked down upon me or had pity for me. It’s a feeling no person with a disability should experience because although you may need assistance from time-to-time it does not rule you out in becoming an independent and successful individual.”Financial Compensation
Employment claims and lawsuits are among the most costly and time-consuming losses facing corporations. In fact, there were 99,922 EEOC charges filed for Florida in 2010 alone, according to Enterprise Florida, the official economic development organization of the state of Florida. The following are all examples of discrimination in the workplace:- Discrimination (based on race, sex, age, religion or other factors)
- Sexual Harassment
- Retaliation
- Whistleblower
- Negligent Hiring, Supervision, Promotion and Retention
- Disabilities
- Breach of Contract
- Emotional Distress & Mental Anguish
- Invasion of Privacy
6 Things You Probably Didn’t Know About Down Syndrome
6 Things You Probably Didn’t Know About Down Syndrome
Education starts with awareness. That’s why we’re taking the time to cover some of the disabilities in today’s society you may have heard of, but know surprisingly little about them. Our blog series starts with Down syndrome.
Read along as we cover some basic facts about this disability, it’s features, and risk factors.
6 Facts About Down Syndrome
What is Down syndrome, exactly? Get better acquainted with this genetic condition with these 5 helpful facts.Down syndrome is causedby extra copies of chromosome 21.
This extra chromosome may be partial or whole, and can lead to one of three different types of Down syndrome: Trisomy 21, Mosaic Down Syndrome or Translocation Down Syndrome.Trisomy 21 is the most common form of this condition.
Trisomy 21 occurs when three copies of chromosome occur instead of two. It accounts for 95% of cases. Mosaic Down Syndrome and Translocation Down Syndrome are much rarer, accounting for 4% and 1% of all cases.Symptoms can vary greatly from one case to another.
Down syndrome isn’t the same across the board. Cases vary from mild to severe. Symptoms may include some or all of the below:- Small Head
- Flattened Facial Features
- Eyes with An Upward Slant
- Ears of Small or Unusual Shape
- Short Neck
- Poor Muscle Tone
- Broad, Short Hands with a Single Palm Crease
- Small Hands and Feet
- Short Fingers
- Extreme Flexibility
- Short Stature
- Brushfield’s Spots
The life expectancy of individuals with Down syndrome has increased over the years.
Medical advancements have significantly increased the average lifespan of individuals with Down syndrome. In 1983, the average life expectancy was 25. In today’s society, the average lifespan is 60.Approximately one-fourth of U.S. families are impacted by this condition.
While the cause for Down syndrome is unknown, the risk increases with the mother’s age.It is the most common chromosomal condition in the U.S.
More than 400,000 individuals have Down syndrome in the U.S. with it occurring on average in 1 of every 691 babies born.Why Dreamscape Foundation is Talking About It
Here at Dreamscape Foundation, we work day in and day out to help individuals with disabilities acquire the tools, programs, and resources they need to live a full life. While our focus is primarily on visual impairments, we don’t view ourselves as a singular community. We understand that the demand for special needs stretches beyond are individual cause, and that change happens through education, understanding, and support. That’s why we want to take the extra step in informing our community of other common disabilities in order to help form a bridge of understanding and connection. If you’re currently seeking local Down syndrome resources in Florida, we encourage you to visit the Global Down Syndrome Foundation online. If you’re an individual looking to raise funds to meet specific needs for yourself or a loved one, talk to us. We collaborate with individuals and organizations to help provide essential resources for individuals with disabilities. Next »« PreviousInterview with Josie Badger, Disability Rights Activist
Interview with Josie Badger, Disability Rights Activist
Josie Badger is a disability rights activist with muscle dystrophy who has worked all her life to empower others. She is driven to help youth leaders and to create new initiatives. Her hard work over the years paid off earning her Miss Wheelchair America in 2012. She has a myriad of accomplishments, and she has more dreams to come. Her greatest is to change how people perceive someone with a disability. To her leadership is most important and she wants to expand her goals to create more leaders, to create a way for others like her.
What are you up to these days? What projects are you involved in?
I find myself again in a state of transition but this one doesn’t have any toolkits or webinars. From the age of 18 to around age 30 I was still considered a “youth” and found much of my identity in peer support, working with other youth in supporting them during the transition into adulthood. What I believe was so successful about that work was the near peer mentoring, other young adults in leadership roles which allowed them to mentor youth slightly younger or less experienced than them. I knew how much it had personally changed my life and wanted to replicate similar programs for others. Those programs that I started during my 20s are still active and successful, although slightly different than when I created them. As an “adult” I felt that these programs would only be successful if youth continued to run them and that my original concepts for these programs could potentially keep them from growing and changing with the needs of society and today’s youth, so I handed them off to other young leaders.
Although I still miss that mentoring and program development, I have realized that my experience will allow me to help others develop similar programs. Pennsylvania was extremely progressive in youth leadership but many states have not caught up. Through my current position as the co-director of RAISE, I am able to work with other states on developing their own youth leadership programs. In addition to this transition in utilizing my passion and expertise, I am continuing to define what it means to be an “adult” with a disability. By going straight through my education from preschool through doctorate, I was able to prolong my “youthhood” until I was 30. Even though I had my own apartments and jobs, much of my identity was still in activities that were for young adults. Now, I am done with school, I have my own business, a house, and a husband. I’m still not sure exactly what that means for me and if I’m doing it right.
What does it mean to be a wife with nearly no physical ability and 24-hour care? Is adopting even a viable option? How would I care for a child? These are all questions I continue to wrestle with on a daily basis.
Where do you see yourself in five years? Ten?
Since my business works on contracts I am not sure what jobs I will have at that time. I am hoping to develop new youth development materials, potentially through vocational rehabilitation that can be implemented in Lawrence County and more rural regions. On a personal level, I hope to be able to build a house that is fully accessible to me. My husband and I are also looking at either fostering kids or adoption. Professionally, I would love to continue working on legislation and public policy. I love all of my jobs but that is an area that I hope to continue to learn and grow in.What makes you happiest in life?
I love to problem solve and brainstorm. As an individual with a disability, I think that this task is vital for survival. From learning how to change wardrobe between scenes in my high school play to figure out how to not lose my ventilator while skiing down a mountain in South Dakota, my life has relied on problem-solving. I love to be able to look at situations, policies, and programs to figure out what makes things better.How do you feel about having a disability? Is it a strength or a weakness? How about both?
There is innate power in being a woman with a disability. Whether we want it or not, we are seen and heard but it is our choice on how we use that platform. Of course, there are those moments where everyone wants to blend in (like those late night shopping trips to Walmart in your pajamas) but for those of us with obvious disabilities “blending in” is often not possible. For me, having a continuous platform has allowed me to teach others about diversity, assuming competence, and the important role that individuals with disabilities play in the world. By having a disability, I am forced to face the barriers created by injustice every day. In order for me to lead a self-determined, fulfilling life it is impossible for me to not fight for equality. Apathy is not an option. There are days that having a disability with a lack of necessary supports or facing discrimination is absolutely exhausting. But it is during those times that I must remind myself that it is not the disability that is the barrier, it is the lack of support and the presence of injustice that causes my exhaustion. It is the moments when I call restaurants to ask if it is accessible to then show up to find out that they consider “only one step” to be wheelchair accessible or when I go to the doctor and they asked the individual beside me to fill out my paperwork (even though I don’t know them), when I need those reminders. Through resiliency, perseverance, and faith weaknesses can become strengths. It is through these moments of mental exhaustion that I am reminded of what others face on a daily basis. It rejuvenates my passion and reminds me why I am doing what I do.How have you overcome your most difficult obstacles?
The two main barriers that come to mind are myself / my false perception of disability and society/governments understanding of disability and success. My misconception of disability prevented me from pursuing my maximum potential for most of my life. Living life and meeting others with disabilities change this false perception for me. In the United States, disability governmental benefits as an adult often depends on your ability to work, earn an income, or have saved money. The benefit system does not take into account the advancements in technology and medical technology that has allowed individuals with disabilities to survive and be successful in careers while continuing to require ongoing expensive medical/home and community-based services. If we are able to earn money than we are at risk of losing life-sustaining services. This was one reason that I establish my business, so I could control my income. This is also why I am married by the church but not by the state. Although I earn over $20,000 a year it is not nearly enough to cover the $250,000 of care that I require each year. My business allows me to regulate my salary so that I can continue to receive medical assistance and I am currently working on state policy that can allow individuals with disabilities to continue to receive medical assistance while earning a livable income.Have accommodations assisted you over the years or has it been an uphill battle to find resources?
A significant amount of my supports are provided directly by other individuals. Because I require 24-hour care I am able to get support in almost all activities of daily living. Slowly, technology is improving allowing, individuals like myself to use it to be more independent. Instead of relying on individuals to type, turn lights on and off, locked the door, change the thermostat, or look outside I am able to use technology and do it on my own. These smart home devices are being developed for the general population and are therefore less expensive than disability specific technology.How has having a disability impacted your relationships? Do you find it a significant part of the communication of needs?
How has it not affected my relationships? A majority of my friends and my husband are individuals that I have met because they are individuals with disabilities or work with individuals with disabilities. Throughout college, a majority of my friends were individuals that I hired to be personal care attendants and throughout my jobs my friends have consisted of individuals who have disabilities. My disability influences the activities we can do, times that we can meet, locations that we can go to due to accessibility, the strange interactions I have with other people, and thus our conversations. Until college, I tried to separate friends from individuals who provided disability accommodations. I didn’t want my friends to think of me as a “burden” because they had to help me. Since I had to hire peers in college to provide my care I overcame that concern and realize that things are much easier when we all help each other.Describe yourself in three words and explain why you chose those words..
- Persistent- the word “no” has never been in my vocabulary. Whether it was dealing with my own physical limitations, bureaucratic barriers, or problem-solving the word no is not good enough. My persistence allowed me to find ways to accomplish my goals or change the system.
- Resilient- I repeatedly run into obstacles that set me back a few steps. Sometimes it involves insurance, change in medical equipment, changes in my health, etc. I have learned that although they are extremely frustrating and time-consuming, these barriers have allowed me to learn and grow. They have additionally allowed me to help others who may have not face the barrier got that are bound to.
- Passionate- when I get involved in an issue, I jump in with my whole heart. I find true joy when I am working on projects that will empower others. This passion is my life power.
A Brand New Beginning: Interview with Joseph Sehwani & Chris Girsch
A Brand New Beginning: Interview with Joseph Sehwani & Chris Girsch
Joseph Sehwani started Dreamscape Foundation, a 501c3 nonprofit foundation, because of his developing Leber’s Hereditary Optic Neuropathy (LHON), a rare visual impairment, in high school at age 16. Chris Girsch, Dreamscape’s social media/blog manager and longtime friend, witnessed firsthand Joe’s worsening condition, as well as the conceptual stage of Dreamscape. Joe and Chris have been friends since high school, and they both realized that it doesn’t take much to make a difference.
Only employing as early as 2017, Dreamscape has been consistently pushing out blog posts and video game charity streams. Chris has witnessed over a year now, Dreamscape showing a complete night and day from when he has started. His daily goals are promotion and spreading the word. “A lot of it is catering to people like Joe, who seem like they don’t believe they will have any relief, or support through anything,” Chris stated.
Making the Difference
Girsch closely witnessed Sehwani’s journey and how he overcame his struggles, starting with stigma. While Joe’s vision isn’t 100% gone, he started noticing others had a lot of confusion surrounding the topic. Arriving to class equipped with a cane, the stigma was at its peak attending high school. The soon charity founder felt as though people felt bad for him, or assumed he wasn’t as intelligent. Sehwani is not one to admire pity, so it was difficult for him to adjust to that kind of reaction. His coping method was to crack a joke about it early on in meeting someone to help clear the air. For Chris, he noticed that people didn’t understand that Joe still had some vision, at the time equipped with a walking cane and wearing prescription sunglasses. There’s no way anyone could know. Chris and Joe were becoming good friends six months before Joe told him he was becoming blind, and it was a bit of a shock. Chris witnessed the evolution of people changing around them, changing their dialect, and treating Joe like he was fragile. It came out of not understanding how to treat or talk to someone with a disability, which is just like talking to everyone else. That stigma was something both experienced. Joe was always very social, calling up friends to go to the movies and hang out, so he got to see who his real friends really were.Sharing The Dream
Part of Dreamscape Foundation’s mission became educating the uninformed, as well as supporting the disabled through accessible technology. As for Joe’s LHON, it’s a gray area where he can look at his phone. In order to see, he takes advantage of using the accessibility options found on the iPhone. All while using accessibility every day, Dreamscape wants to educate people that visual impairments are more than just being blind or not blind. There is a mix of in-betweens, such as with LHON. Resolving confusion could also end some stigma for people, in their receptiveness of those with visual impairments. It’s not the same for everyone. Not only does Dreamscape help the disabled, one such story found our charity support a young girl with cancer. Although, Sehwani’s advice to any nonprofit starting is to find a niche and not take on everything. With that said, ever since Joseph’s grandfather passed of cancer, he was glad to help someone with cancer. Dreamscape stays open to various needs in the future. As the charity matured, they found their niche. However, their open-mindedness to helping others in general, saved that young girl with cancer. She wouldn’t have gotten treatment without Dreamscape’s help. According to Chris, “We’ve done so many fundraisers; Some for St. Jude, we’ve supported orphanages, and second chance homes for kids in the state of New Jersey. All while leading up to the Giving Season (Holidays) working with Toys for Tots and Salvation Army.”A Fresh Start
In terms of last year’s accomplishments, Joe says “I would say another big thing that we accomplished over the year would definitely be establishing the Dreamscape Foundation website and kind of really pushing that out there.” Sehwani personally works on the website, and states “It was less of rebranding and more of building context in what we’re doing.” Dreamscape upheld their commitments with schools in Jersey, supporting accessibility school programs. Here at Dreamscape, accessibility means independence for everyone. When Joe was starting the new website, User1st and Dreamscape partnered up. User1st is a company who helped teach him a lot about accessible software for people with disabilities. Joe then returned the favor, by supporting their web accessibility initiative. Through User1st, Sehwani started reaching out to Universities to help disabled students have all the access they need. Before Chris was faced with Joe’s visual impairment, he admits that he did not think too much about accessibility. He did not know the full measure of its importance to people with disabilities. As someone without a disability, he says “it taught [him] a lot!” Dreamscape current campaign is helping twins Justin & Kenny Jongsma who both have LHON, like Dreamscape owner Joseph Sehwani. Brand new accessible technology for the blind called eSight eyewear has changed the game. The glasses like device adjusts visual impairments and corrects the vision loss. According to Chris and Joe, everyone deserves independence through accessibility. “There really is no nonprofit for accessibility,” Joe says. Together, Joe and Chris want Dreamscape to be out there and to have its own niche. Not just another visual impairment or blind charity, cancer charity, etc. but we want to leave a unique footprint on the world of accessibility. Next »« PreviousCan Exposure Create Normalcy for the Disabled Community?
Can Exposure Create Normalcy for the Disabled Community?
Can someone have a disability and still lead a normal life?
It’s a question many Americans ask themselves as they find ways to live life in the wake of their disabilities. While physical and mental limitations can turn daily habits into difficult challenges, their circumstances come with another hurdle; one that is psychological.
How do you find equal ground in society when everyone views you as different?