People With Disabilities – Page 5 – Disability Justice and Violence Prevention Resource Hub

The Differently Abled Advocate: Anything Is Possible by Luna Eversong-kloss

(Picture Description: Luna is standing in a yard with bushes in the background. She has a black form-fitting dress and is using a red walker. Her hair is brown with bright purple tips.)

One thing my journey healing from domestic violence taught me is to advocate for myself. While on this journey, thanks to my advocate Nicole, I was given the opportunity to advocate for others. This is a desire I had for a while, but I didn’t know where to start. This opportunity was the start of a new journey, the spark of a passion I never thought I’d be able to pursue.

My name is Luna Eversong-Kloss and I’m The Differently Abled Advocate.

2 years ago, I got a call from Nicole about a panel with Indiana disability Justice that she was going to present on. She asked me if I wanted to share my experience as a disabled person and a domestic violence survivor. I would also share my thoughts on how resources for disabled survivors could improve and better support victims. It was a panel on sexual wellness and violence prevention. I was so excited she invited me. I jumped at the chance. This is the kind of thing I wanted to speak about, but I didn’t know how to get people to listen to me and here was my opportunity.

The day of the panel came. I was nervous and hoping that I would be able to speak and be understood. It was over a zoom call and there were lots of people in there. I was so scared that I would not be able to speak, but it turns out I found my voice. I met some great people, and we had some great discussions. I did so well on the panel that I got invited to come back a few times. And I got paid to do it. I couldn’t believe it. My voice actually had value. I’m going to be honest, as an adult with a physical disability, it was hard for me to feel like I had much value specifically in the workplace. Whenever I would speak to people online about issues in the disabled community, it seemed like nobody listened. Being abused myself, whenever I used my voice and tried to ask for help for a long time, it seemed like no one cared.

Words cannot accurately express the pride that I felt after getting feedback from these panels, from other advocates and organizations who do this kind of thing all the time. Here I was never having done anything like this before, and I actually had the power to make a real impact.

I talked to my family and my therapist and my husband about these panels and they were all really proud of me. That’s when my brother pitched the idea of me becoming a public speaker. My mom agreed that I would be really good at it. I really liked that idea. My dad had been pitching the idea for a while that I should write letters to Congress about some of the issues that myself and other disabled people were facing. But that seemed a lot more daunting than being a public speaker. Maybe becoming a public speaker will one day allow me to be able to speak to lawmakers and actually be listened to, as opposed to writing letters as an anonymous face.

Well, it took me a few months, but I finally took the plunge and launched my own website as a public speaker and advocate.

I want to help people understand that with the right support and resources, anything is possible, and I want to do so by speaking about my experience overcoming adversity while living with a disability. I want to be able to talk to organizations, lawmakers, schools, and anyone who needs to hear it about the importance of having available accessible support and resources for those with disabilities. But I also want to talk to anyone who finds themselves in a vulnerable situation struggling to find support.

Throughout my experience escaping domestic violence, and even recovering, I have found that, depending on where you live, support and resources can be scarce, especially if you are also disabled. Sometimes the available support and resources aren’t even accessible to those with disabilities, and that’s something I don’t think a lot of organizations realize. I remember not being able to go to shelter because the only shelter available to me required me to be fully independent and functioning. Some resources I encountered couldn’t help me because I was too young or because I had a child. I encountered a lot of barriers when I was trying to get help getting out of my situation, and I know that I’m not the only one out there going through the same experience. I’m definitely not the only disabled person going through this experience.

Luckily, I eventually was able to get the support I needed and form the system. But the amount of struggling I had to experience in order to do that, in my opinion, was unnecessary. I don’t want to see anyone else struggle like that to get the help that they need.

Sitting here today. I know that the support and resources that I did have and do have were essential for where I am at today. I couldn’t have gotten here on my own. I don’t even know if I would be here if it wasn’t for my support system. I never thought that I would be able to sit here today and say that I am actively recovering and that I feel strong. Now I will give credit where credit is due and say that if it wasn’t for my own determination and tenacity, I wouldn’t have got what I needed in order to be here today with you talking about this. But that support system I have has been just as essential to me finding my footing again, as my own qualities that helped me recover. I remember not that long ago I thought something like this would be impossible. Now it’s possible, and I want to show other people that. I want to share my story, my thoughts and my experience in the hope of inspiring real change. Change that will allow people like me, disabled or not, to have a better quality of life, find their strength again and to feel valuable and heard.

If you’re interested in hearing more about my story and what I’m trying to accomplish, I have blogs and video clips on my website discussing issues that people in the disabled community face as well as my own experiences. If you’re interested in speaking with me, you can book time with me on my website. Doing so is a good way to find out If you would like me to give a longer talk or be on an upcoming panel. I would love to speak with you and share my experience and my thoughts on how we can better support people in vulnerable situations, especially the disabled community.

My Website https://thedifferentlyabledadvocate.org

Social Media

Facebook https://facebook.com/109310851920835/

Instagram https://www.instagram.com/differently_abled_advocate/

Twitterhttps://twitter.com/imdiffabled?t=Xz1Lb9JvAiwhpMPcWwlgag&s=09

The Differently Abled Advocate

Anything is possible with the right support.

By Luna Eversong-Kloss

(Picture Description: Luna is standing in a yard with bushes in the background. She has a black form-fitting dress and is using a red walker. Her hair is brown with bright purple tips.)

My name is Luna Eversong-Kloss and I’m The Differently Abled Advocate.

Image description: a blue background with black dots is framed with black and red. The yellow lettering says "I HAVE A VOICE" with 3 yellow lightening bolts in the upper right corner. — Image description: a blue background with black dots is framed with black and red. The yellow lettering says “I HAVE A VOICE” with 3 yellow lightening bolts in the upper right corner.

Well, it took me a few months, but I finally took the plunge and launched my own website as a public speaker and advocate.

My Website https://thedifferentlyabledadvocate.org

Social Media

Facebook https://facebook.com/109310851920835/

Instagram https://www.instagram.com/differently_abled_advocate/

Twitterhttps://twitter.com/imdiffabled?t=Xz1Lb9JvAiwhpMPcWwlgag&s=09

ABOUT THE AUTHOR: Luna Eversong-Kloss

Luna is a tattoo, model, advocate, writer, and mother of two. She also has cerebral palsy.

Luna is standing with her crutches. She has tattoos and a lip piercing. She has long brown hair’with blonde streak. Her head is cocked, and she is smiling broadly. She is wearing a black shirt with skulls and flowers.

A Snapshot of Brian Springer’s Life

Hi, you my name is Brian Springer. I am 41 years old, and I am from Houston Texas. I went to Deer Park Hgh School and graduated in 1999. I moved to Mississippi when I was 19 and got a job working on a tugboat barge. I then left and did the auction driving cars, detailing and driving wreckers and forklifts. A few short years later I worked on commercial refrigerators until my back injury in 2002. I also have spina bifida occulta, autism, ADHD, anxiety, and depression. My hobbies are playing with my son, installing stereo systems, hanging out with my fiancé, and learning how to wire 12 volt battery systems. These hobbies help with my anxiety and depression. I have only had one surgery when I broke my back and pelvic. Now I can’t work, but I don’t let my disabilities stop me from helping my fiancee, getting on the floor and playing with my son and helping my future father in law around the house.

ADDITIONAL INFORMATION:

Brian enjoys creating inventions. Down below an image of one of his inventions. It is a very bring light made with various parts. This bright light will be great to use during a power outage.

It’s got a Bluetooth car stereo a 12-48v dc light 💡 dc USB ports one cigarette lighter 12v plug and a plug to run a fan it has 4 DEWALT 20v battery’s charging of of a laptop 20v charger

Snapshot of One Person with Spina Bifina: Courtney Parker

Spina bifida also known as split spine. A birth defect in which a developing baby’s spinal cord fails to develop properly. There are fewer than 200,000 cases per year. There are three types of Spina bifida occulta also known as hidden spina bifida, myelomeningocele and meningocele.

Occulta- Also known as hidden spina bifida. It is when a baby’s back bone doesn’t fully form in pregnancy. The baby is born with a small gap in the bones of the spine. Spina bifida occulta is common and happens in 1 in 10 people.

Meningocele- A birth defect in which a developing baby’s spinal cord fails to develop or close properly in the womb.

Myelomeningocele- This is the most severe causing paralysis, bowel and bladder difficulties.

Hydrocephalus- Water on the brain.

Shunt- A narrow piece of tubing that is inserted into the brain in the fluid filled ventricle. The tubing is then placed most commonly in the abdomen but can be placed in the heart or lungs.

Hello, my name is Courtney I was born in 1989, and I was immediately rushed to Riley hospital in Indianapolis due to a hole in my spine. I have Spina bifida myelomeningocele, the most severe type causing me to be in a wheelchair for the rest of my life. I have had multiple surgeries due to my disability: 4 back surgeries, bladder and bowel augmentations, 3 shunt replacements just to name a few. But I don’t let my challenges stop me from doing the things I like to do. My hobbies are hanging with my fiance Brian, playing with our son, art, writing, and listening to music.

I will say this: Being a disabled parent to “Spider-Man” has many challenges. . The most challenging things are lifting, bathing, and dressing him. But there are many rewarding times in being his mommy, such as his smile and him waiting for me in the morning for snuggles and our play time. Yes there are many struggles, but Brian is always by my side as a wonderful support. He has built a carrier that attaches to my electric wheelchair so on walks, in stores, at the park and many more places, I can put him in the car seat and wheel him around that way.

I also have anxiety and depression so some tasks are harder to handle than others. The biggest task that is hard for me would be large crowds. I have trouble with severe anxiety speaking in front of people so writing is an outlet for me to deal with my emotions. But in the last few years Brian has been working with me on getting over my fears.

Domestic Violence Prevention, Disabilities, and Caregivers

In an effort to create a safe space to read about an uncomfortable topic, like domestic violence, I want to ask you to close your eyes for a moment and envision what it might take to eliminate violence. Take some deep calming breaths, in through the nose and out through the mouth, feeling your diaphragm expand as you fill with the good and contract as it expels the bad, and read on when ready…

Domestic Violence is a terrible thing that comes in many different forms; physical, emotional, spiritual, sexual, marital, parental, verbal, sensory, etc. It’s violence in the home, it’s violence at the hands of someone you trust, someone you rely on, someone you may love. In every relationship the potential for violence exists. It may come from the caregiver, it may come from the person receiving care, or it may come from both. Intentional domestic violence is easily recognizable as evil, but unintentional domestic violence is something else entirely, and potentially even more traumatizing as it is unexpected and uncontrolled. Both must be prevented.

How do we prevent domestic violence and reduce isolation? Through support, engagement, and open communication and creating safe spaces. No one should ever feel as though they are alone and have no one to talk to. If they are trying to speak up, no one should ever feel as though no one cares or no one is listening. People with disabilities, including conditions of aging that most will experience later in life, are among the most vulnerable to domestic violence. Our disabilities, if left unsupported through accommodation, can isolate us. It is through supported independence that this population is best equipped to prevent such violence before it occurs.

Disabilities can impact communication and emotional responses as much as they impact mobility, sensory experience, and functionality. Those closest to people with disabilities are often the most aware of how they have adapted to accommodate these challenges in a world that was not designed from the start to be accessible. Our loved ones are often the most capable in supporting our independence, including our ability to speak out about our own needs, including our own safety and treatment from others. Our friends, congregations, and close community members are often those most sensitive to our wants, desires, needs, limitations, and safety accessing social engagement. These people are not just our friends and family, they are our Caregivers, and their support helps us maintain our independence as active members of our families and community. Sometimes the people with the disabilities are the Caregivers too.

Fighting against isolation comes with most disabilities and conditions of aging. It is sometimes easiest to stay home, especially as the impacts of the disabilities and age progress; but the less engaged we are with our community, the more vulnerable we become. As our community shrinks, those closest to us must naturally provide additional support, or we adapt but take on more than we should ourselves, sometimes at physical risk. Regardless of what disability you have, the lack of social interaction takes an emotional toll, potentially leading to outbursts that can become violent themselves. Those who are providing support, sometimes the only person providing support, without respite care can easily become overwhelmed. Leading to potentially violent outbursts as well. The care relationship can become toxic.

Frustration leads to anger, anger leads to aggression, aggression leads to suffering. Someone who needs daily assistance with personal hygiene, being vulnerable to receive support from someone they love and trust, unintentionally becomes a victim of sexual assault because that person wiped or cleaned too aggressively. Someone who needs mobility assistance becomes the victim of physical abuse because the person assisting them unintentionally injures them by rushing, being rough, or not paying attention to their safety during a transfer. A loved one becomes the victim of unintended verbal abuse because the person with the disability’s frustration reaches a breaking point and there’s no one equipped to hear it. An aging immigrant who must rely on a visiting nurse who doesn’t speak their language fluently becomes a victim of neglect, suffering emotional abuse due to the barriers in communication and culture. Instances of unintended domestic violence, fueled by uncontrolled emotion, can have lasting traumatic impact on the people involved and their relationships going forward.

Getting Support, Removing Toxic Stress

Maintaining connection with a supportive community of Caregivers, including close family, is the best way to prevent this toxic care environment from developing, and provides support to guard against the violence if it begins to develop. In today’s world of pressing fast paced social and work demands it can be a challenge for those who want to help to make the time. Many people wind up isolated from their would-be caregivers for these reasons too, and don’t even speak up when they need help because they don’t want to be an inconvenience or a charity case. Ultimately this could lead to institutionalization, which opens a whole new door to potential structural or systemic violence.

However, many don’t know that if you are eligible for Medicaid Waiver services, there is a service that can help you establish a supportive network of Caregivers by providing compensation for the non-skilled services that they provide. Many people with disabilities and conditions of aging don’t apply for Medicaid Waiver services because they assume they won’t qualify without exploring it. Advocates Personal Care, an approved Medicaid Waiver service provider, is seeking to employ family and community Caregivers of Medicaid Waiver eligible people with disabilities and/or conditions of aging. Offering a starting wage of $13 an hour for services that they may already be providing to someone close to them. If someone is unsure if they qualify for Medicaid Waiver Services, or doesn’t know where to start, or what questions to ask, Advocates is able to assist with navigating that process.

Advocates Personal Care can be contacted by text or phone call at (317)527-4251, or online at https://advocatescare.com/get-started/

Having paid Caregivers through Medicaid Waiver services helps people with disabilities and conditions of aging maintain their independence in their own homes by ensuring appropriate supportive care when needed. As the caregiver is receiving payment for the time that they are providing services, it becomes easier for the Caregiver to reduce work hours or sacrifice personal time if necessary. A Consumer of Medicaid Waiver services can have more than one paid family or community caregiver, allowing the supportive services to be shared by the Consumer’s community. Having paid Caregivers as employees of Advocates Personal Care allows for better coordination and engages the provider, Advocates, as oversight and another layer of protection in the event a care relationship becomes toxic.

Caregivers must clock-in and document their time, and Advocates Personal Care must follow-up to ensure the care provided is what the Consumer needs and wants, giving the Consumer the control over what services they are receiving and from whom. Advocates is able to provide non-skilled services to any Medicaid Waiver eligible person with disabilities or conditions of aging throughout the state of Indiana, as long as the Consumer has enough potential Family and Community Caregivers to ensure consistent care when needed, including backup if an expected Caregiver is unavailable.

Some examples of non-skilled services are meal planning & preparation, laundry & light housekeeping, grocery shopping & community-based errands, medication organization & reminders, socialization & safety, mobility & transfer assistance, assistance with hygiene, eating, and other activities of daily living. If you are a person with disabilities or a senior citizen who relies on support with these types of activities to maintain your independence in your home, or if you are providing this kind of supportive care to someone close to you who may be eligible for Medicaid Waiver Services, contact Advocates Personal Care to learn more.

Advocates Personal Care, (317)527-4251, https://advocatescare.com/get-started.

Written by: Jeremy K. Warriner – Accessibility, Hospitality, & Outreach Consultant; Inspirational Speaker; CEO & Founder of Walking Spirit & Spirit Therapies, LLC.

Jeremy Warriner

Jeremy Warriner is an Indianapolis native, Black Belt in Shorei-Goju Ryu Karate, with a degree in Consumer and Family Sciences from Purdue University emphasizing in Hospitality and Tourism Management. He worked as an Operations Director and Assistant General Manager across multiple brands and markets in the Hospitality industry for over a decade. In 2005 Jeremy sustained severe burns in a car accident that required the amputations of both legs from above each knee. This traumatic event led Jeremy to redefine his path as he accepted his newly added identity as a person with disabilities. Whether walking on technologically advanced prosthetic legs or utilizing a wheelchair, Jeremy is an active member of his community, charter member of the international Rotary Club for World Disability Advocates, and founder of Walking Spirit & Spirit Therapies, LLC which provides Diversity, Equity, and Inclusion assessment, consulting, and training from a Disability Lens. Jeremy’s current project is adapting Karate to his disability. He can be reached through his website at https://www.walkingspirit.org, or by email at jeremy@walkingspirit.org.