Navigating Life After Diagnosis

Arturo Contreras

 

Hey folks! I’m Arturo Contreras, a 25-year-old Latinx guy on a journey of understanding and advocating for disability justice. Like many of us, I’ve recently been diagnosed with ADHD. That moment was both a relief and a revelation—a chance to finally put a name to all those quirks that made me feel out of place. But let me tell you, disability justice goes far beyond just an individual diagnosis. It’s about building a world where everyone, regardless of their abilities, feels seen, valued, and supported.

Today, I want to dig a little deeper into some of the key areas that have helped me make sense of this new chapter, and how they relate to broader disability justice. Let’s jump in with a positive, solutions-focused mindset.

1) Holistic Wellness: Caring for Both Body and Mind

Taking care of your body isn’t just good advice—it’s essential for navigating life with ADHD, ASD, or any other condition. I’ve found that regular exercise and a balanced diet can really make a difference. But beyond individual wellness, we have to look at the bigger picture. The disability justice movement teaches us that accessibility in health and wellness is crucial.

In an ideal world, everyone should have access to affordable, inclusive health care, nutrition education, and adaptive exercise programs. Whether it’s creating sensory-friendly gym spaces or offering affordable, healthy food options in low-income communities, there are ways we can make wellness more accessible. These steps help dismantle ableism, the systemic discrimination against disabled people, by making it easier for everyone to thrive.

 2) Building Community: The Power of Interdependence

 The principle of interdependence, from the Disability Justice framework, reminds us that we don’t have to face our challenges alone. Community is a powerful thing, and it’s not just about socializing; it’s about mutual support. When I was first diagnosed, I felt isolated. But connecting with others who shared similar experiences was transformative. It’s in these communities that we can share strategies, vent frustrations, and most importantly, feel understood.

Disability justice pushes us to expand our definition of community. We need to make sure that digital spaces are as inclusive and safe as physical ones, so that everyone can find their “neurokindred,” no matter where they are. We also have to remember that community spaces must be accessible in terms of transportation, language, and sensory accommodations.

3) Medication: Your Body, Your Choice

Medication can be a complex decision. While it’s an incredibly personal choice, it’s also something that disability justice emphasizes should be accessible and informed. We need to advocate for greater transparency and accessibility in healthcare systems, so that everyone can make informed decisions about their bodies. This also means pushing for healthcare that is culturally competent and sensitive to the unique needs of disabled folks from marginalized backgrounds.

We must also support those who choose not to take medication. The disability justice framework reminds us that disability is not inherently negative. Society often tells us that the goal should be to “cure” or “fix” our conditions, but it’s about embracing our unique perspectives and ways of being.

Looking Forward: A Call to Action

Disability justice is not just about acknowledging that disability exists. It’s about addressing the societal barriers that make disability harder to live with. We must commit to making systemic changes that prioritize accessibility, inclusivity, and the voices of disabled folks. Together, we can create a world that values diversity of all kinds—one that moves beyond mere tolerance toward genuine celebration and support.

So, whether you’re newly diagnosed, or you’re a long-time disability justice advocate, remember this: You’re not alone, and you have a community that has your back. And as we continue to learn, share, and fight for justice, let’s hold on to hope and solidarity. Together, we’re unstoppable.

ABOUT THE AUTHOR: Arturo Contreras

Arturo Contreras Mejia is a 25-year-old Mexican Man. He is currently a student at IUPUI studying digital marketing. Arturo is also a part of IDJ as a social media captain (intern). In his free time, Arturo enjoys spending time with his loved ones.

Image Description: Arturo is standing on the left of the picture, in front of a telephone pole with his arms crossed. He is wearing a pink hoodie, jeans, and sunglasses. He has a serious bearded face. To the right, is a plentiful cactus plant. Behind a gas station that reads “kinda tropical”

Image Description: Arturo is standing on the left of the picture, in front of a telephone pole with his arms crossed. He is wearing a pink hoodie, jeans, and sunglasses. He has a serious bearded face. To the right, is. a plentiful cactus plant. Behind a gas station that reads “kinda tropical”

Domestic Violence Prevention, Disabilities, and Caregivers

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.             


Indiana Culturally Affirming Healthy Sexuality Education & Resources for People with Cognitive and Developmental Disabilities

This page will provide contact and program information for organizations in Indiana that provide healthy sexuality education supported by organizational policies:

AccessAbility

  • Type: disability services
  • Mission:   The result is that our communities are enriched through the full participation of ALL PEOPLE. Building advocates and inclusive communities.
  • Services: Provide individual consumers, governmental agencies, corporations and other non-profits with the tools necessary to ensure the acceptance, respect and inclusion of everyone. 
  • Location:  9105 East 56th Street Suite 308 Indianapolis, IN 46216
  • Phone:   (317) 926-1660
  • Fax:   (317) 926-1687
  • Email: info@abilityindiana.org
  • Website:  http://www.abilityindiana.org/

The Arc of Indiana

  • Type: disability services; Policy advocacy and direct services
  • Mission:   The Arc of Indiana is committed to all people with intellectual and developmental disabilities realizing their goals of living, learning, working and fully participating in the community.
  • Services: pooled special needs trust, advocacy network, support in applying for medicaid, medicaid waviers, SSI, SSDI, vocational rehab, career counseling, community living options, lifecourse framework, supported decision making, education for consumers and providers, health insurance education, audio and visual resources
  • Locations:  https://www.arcind.org/about-the-arc/local-chapters/ 
  • Phone: 800-382-9100
  • Fax: 317-977-2385
  • Email:   https://www.arcind.org/contact-us/ 
  • Website:  https://www.arcind.org/ 

Indiana Institute on Disability and Community (IIDC)

  • Type: disability services; advocacy, education, community services, research
  • Mission:   to work with communities to welcome, value, and support the meaningful participation of people of all ages and abilities through research, education, and service. 
  • Services: Interdisciplinary pre-service preparation and continuing education; Research, including basic or applied research, evaluation, and public policy analysis; Information dissemination; and Community services, including training, technical assistance, and model demonstration.
  • Location: 1905 North Range Road, Bloomington, IN 47408-9801 (https://www.iidc.indiana.edu/pages/contact-us-map )
  • Phone:  812-855-6508
  • Fax:  812-855-9630 
  • Email:  iidc@indiana.edu
  • Website:   https://www.iidc.indiana.edu/ 

Self-Advocates of Indiana (SAI)

  • Type: disability services; Personal Advocacy
  • Mission:   Self-advocacy is important because it is a way for people to know that all people, including people with disabilities, have rights. We help people understand that we want to be treated with respect. It is a way for our voices to be heard.
  • Services: education, state and local advocacy, resource consolidation
  • Location: 143 W. Market Street, Suite 200, Indianapolis, IN  46204
  • Phone:  317-977-2375 
  • Fax:  317-977-2385 
  • Email:  https://www.saind.org/contact-us/ 
  • Website:  https://www.saind.org/ 

The Village of Merici

  • Type: disability services; direct services
  • Mission:  The Village of Merici, Inc  provides residential and community opportunities for adults with developmental disabilities that promote a strong sense of community. By creating a sense of community we will create a sense of belonging.
  • Services: provides residential supported living and community integration services to individuals with developmental disabilities. The Village of Merici is an approved provider through the Bureau of Developmental Disabilities (BDDS) Waiver programs and is accredited through CARF International.
  • Location:  5707 Lawton Loop East Drive, Indianapolis  IN 46216
  • Phone: 317-292-9408
  • Email:   colleenrenie@villageofmerici.org 
  • Website: http://villageofmerici.org/

Credit

Post written by Skye Ashton Kantola, Assistant Director, Multicultural Efforts to End Sexual Assault, kantola@purdue.edu and  Cierra Olivia Thomas-Williams, Prevention Specialist, Indiana Coalition Against Domestic Violence (ICADV), cwilliams@icadvinc.org.

Live with Christine Dahlberg and Jody Powers from Indiana Governor’s Council for People with Disabilities

Live with a Christine Dahlberg and Jody Powers from Indiana Governor’s Council for People with Disabilities. (This interview was conducted in early March 2020.)

Credit

 Post by Cierra Olivia Thomas Williams, Prevention Specialist at Indiana Coalition Against Domestic Violence