I had the honor and privilege to be invited to the 2025 NADSP conference, Elevate, in Buffalo, NY. I had never been to the East coast before this trip. I got to be in Canadian waters and see Niagara falls! Presenting was amazing and I made amazing connections. One of the best experiences I have had to date, and I got to experience with my partner in crime and best friend, my hubby. Niagara Falls is breathtaking and the pictures don’t do it justice. Here are some pictures from our trip.
When injustice becomes more important than love for our fellow humans, we have lost our humanity. That humanity is what makes us critical thinkers and creators. We have to get back to this somehow.
All we can do is go through life with love. I am going to practice this daily, with a spoonful of gratitude. I will continue to fight injustice. Always remember “when I justice becomes law, resistance becomes duty”.
When my mom passed away, I was given a chakra deck from a good friend. The number 8 has started to be significant since my mom passed away. She passed away 8 days before my 39th birthday in 2024. In 2002, my dad passed 8 days after my 17th birthday. My husband just a few days ago connected that our cat, Jameson, who meant the world to us, passed away 8 days before our anniversary, in 2024. Now, as if that wasn’t strange enough- my husband was born in 1988. That is a lot of 8’s to just be a coincidence.
I am not religious but I consider myself spiritual, but I lean more pagan. I have a naturally rebellious nature and can’t subscribe to one way of thinking. I have done some research about the number 8 within different spiritual/religious traditions. My mom identified as Christian, so even though I don’t share that belief- I am fascinated by the biblical perspective. Here is what I found:
My mom was one of the most caring people that walked this earth and she would spread love everywhere she went and to anyone and everyone. She never let her struggles stop her from spreading joy to others. My mom lived with Bi-polar Type 1 with psychosis. She took good care of herself but she was often over medicated during my childhood. She had to sleep a lot to balance her mental health and life responsibilities. We watched a lot of movies together and I have fond memories of making her watch Star Wars a million times, Neverending Story, Lord of the Rings, E.T., and other great 80’s and 90’s sci-fi and fantasy movies. She would take me to the video store every weekend and let me just go crazy and rent a ton of movies and video games.
Anyway, my mom was the best human and anyone that met her would agree with that. Despite her many struggles, despite being treated less than, despite being over medicated, despite getting Neuroleptic Malignant Syndrome, and then even upon developing dementia- she was always there one way or another. There were times when she was a zombie and I thought I had lost her forever, but she would get a little better. It was a cycle until the final months of her life. The dementia got really bad and I knew she wasn’t coming back this time. This triggered a hypomanic episode and the worst one that I have had to date. My brain finally accepted that she was gone for good this time. She died about 5 months later.
I have been processing so much anger about the way she was treated. She was neglected so many times it makes me nauseous. My mom sent me a message that it isn’t my fight. Apparently she died in her sleep and just one last final breath. Getting to the after life was like a birthday party and finally going home to be with our ancestors. I won’t go into how I know this at this time because that isn’t the story that I am meant to tell right now.
My mom is telling me that it is time to move on with her and that she will always be with me no matter what. I do believe that I will see her and my other ancestors again someday but I have a lot of work to do here first. My mom taught me all of the most important lessons that humans need to learn in life and that has always given me an edge. My mom taught me empathy. My mom taught me kindness. My mom taught me forgiveness. She taught me to be the best human that I could and she taught me that I could do and be anything.
Mom, I would never have become who I am today without you. I am so sorry that life wasn’t better to you but sometimes our perception is skewed. You said you had a happy life and I heard the message. I wish I would have seen it more when you were here but it gives me peace now when I need it most. I will never stop missing you and I know you want me to move on with you and not without you. I love you to the moon and back.
Today marks the start of Disability Pride Month! To my fellow disabled humans, we are going to make it through this if we keep fighting- like we always have.
Try to do something to celebrate this month even though it feels difficult to do so right now.
Here are some reminders from our Mother of Disability Rights- Judy Heumann:
“Change never happens at the pace we think it should. It happens over years of people joining together, strategizing, sharing, and pulling all the levers they possibly can.”
“Part of the problem is that we tend to think that equality is about treating everyone the same, when it’s not. It’s about fairness. It’s about equity of access.”
#Bethechange
#disabilitypridemonth
#disability
How have so many humans fallen so far from grace? The word grace means:
- Simple elegance or refinement of movement
- Courteous goodwill
- Do honor or credit to (someone or something) by one’s presence
There are certain groups in the United States that claim to live and breathe these concepts and yet those same people are doing the EXACT opposite. For those of you who dig Jesus, he would be absolutely appalled by your actions. Jesus preached about love, acceptance, and charity. Jesus washed the feet of someone considered to be the lowest form of human you can be, and he did it with love, compassion, and grace. When the idiots still weren’t understanding his message, he went into the temples and turned over tables in anger. Yes, even Jesus got angry and upset and threw fits. Jesus was pissed because he was like my dudes did you not hear me? I want you to love everyone and not be a terrible religion like the Romans who are slaughtering the humans I love.
Personally, I believe the Bible is half history book and half guidebook full of metaphor. There is nothing Holy about it anymore than me claiming Lord of the Rings or Hitchhiker’s Guide to the Galaxy is Holy. See, it is either all true or it’s all just stories. You can’t pick and choose which books have purpose and meaning and matter. Norse gods are real, Egyptian, African, and every other culture that is OLDER than yours. Why? Because you are just a little tiny human and it’s arrogant to claim you know for sure where every human is going. The concept of hell was stolen from a much more ancient belief system that belongs to Pagans. However, it wasn’t anything like what you claim. In fact, almost every single aspect of your belief is stolen from others.
You can’t claim to be a Christian if you choose not to be “Christ” like because that is literally the meaning of the word. If you support Trump, you are against Jesus and everything he taught you. That means you are ignorant about your own belief and that makes me so sad for you. If you would just pick up some books, you too could understand your own belief system and then maybe you can be a good human that Jesus would be proud of instead of shaking his head.
Also, Elaine… I don’t have grace, I don’t need grace, I don’t even say grace. I had to reference this otherwise I wouldn’t be me. 😆
I was getting ready for the day and this idea for a graphic came to me. What do you think? I might use this in a cultural awareness and disability training I am currently creating. This shows my journey over the last decade! I love the person I have become. THIS is what my Mom and my Grammy and people with disabilities and mental health struggle just like ME, taught me. We won’t ever be silenced again! Trump, we are coming for you, ***hole.
Yesterday, I had the pleasure of participating in the 2025 NO KINGS Protest. Eugene, OR had thousands of people. This is just the beginning but we made history.
NO KINGS NO MASTERS
Impeach Trump
Me: I’ve been thinking about something lately regarding the way I process my grief. The initial stab, besides the obvious, seems to come from the change in routine. Here is what I mean. My mom texted and/or called me every single day and often multiple times. Now my phone barely goes off from personal messages outside of my husband. I spent my 40th birthday mostly alone and wishing my mom could call me or text me. I never knew just how big of a hole her death would leave in my heart. I mean, I did, but holy shit. I always said that when she died, I would lose it completely. I, in fact, did lose it completely for about a year or so. I am finally just starting to feel like myself again and like I can breathe again. They say the harder you love, the harder you grieve.
I spent the first several months confused. I am still confused about what happened exactly. Was my mom trying to get up and she fell; the lack of oxygen led to a heart attack? Did her oxygen come off while sleeping? Did they find her dead or were they trying to get help and she died? I have no answers to these questions. I have been grappling with asking for records from the facility and case management entity. Is it worth it? It won’t bring her back. However, I can’t handle injustice, and I can’t seem to move on from this thought. My Mom was screwed over and mistreated so many times by so many people. I want revenge. I want them to have consequences. Mostly, I want them to understand and change their thinking and catch up with the rest of us “woke” people. When I think about my mom this is what comes to my mind, and it won’t stop. That could be a sign, or it could just be the way my brain works.
I’m tired of being angry on behalf of my mom and the burden that has been part of my existence. I think I need some answers to move on, and I want to remember happy times and not just the trauma. Even with death, I need to know why.
Grief was busy for this one.
I came across this on Facebook and thought it was very relatable. There are a lot of strengths not mentioned here too. Having a strong sense of justice for everyone, an abundance of empathy, think outside the box, offer different perspectives, creative, and also unique just like all humans. Can you relate to any of these?
Have you ever seen a child or adult with autism stand at the door with their bags packed even though it might be hours or days before the trip is happening?
Here is how that translates into adulthood with AuDHD. My logical brain knows that we are moving in the middle of July. However, my emotional brain kicks in combined with executive functioning differences. So, I have nights like tonight where I am struggling to get to sleep because I am ready to pack my bags and boxes and put them by the front door, so everyone knows I am ready to move. It’s hilarious and sad at the same time because trauma plays into this a lot, but the humor comes from how silly it can seem from the outside.
My brain is ready to close one chapter and start another. While my logical brain says ok slow down, we have to plan and do tasks to get there. My emotional brain says this situation has been traumatic and I want to leave it behind.
When I was a kid and I was excited about someone coming to visit, I would stand with my face against the glass waiting for them to turn around the corner into the cul-de-sac I lived in, and if the plan changed, I was devastated, and my day was ruined.
Some of our “behaviors” can seem strange or concerning to people because they don’t understand the reason for it, but that can lead to a lot of stigma. If you are human, you have “behaviors”. That is normal. When you have a disability these “behaviors” suddenly get labeled as difficult or unusual. When humans have “behaviors” they are communicating a need that isn’t being met. For people who don’t use words to communicate this becomes dangerous. If you would like to see how dangerous, I encourage you to watch the documentary “This is Not about Me” by Jordyn Zimmerman.
We need to remember that if it harms nobody then let people be- stop judging and worry about your own life. If you have time for judgment, then you need to get a life or use that time productively.
Final thoughts- I have been thinking about the 10 Principles of Disability Justice today and how important they are now more than ever. Really it should just be a guide on how to be the best human possible. Here they are from the Sins Invalid website:
- INTERSECTIONALITY “We do not live single issue lives” –Audre Lorde. Ableism, coupled with white supremacy, supported by capitalism, underscored by heteropatriarchy, has rendered the vast majority of the world “invalid.”
- LEADERSHIP OF THOSE MOST IMPACTED “We are led by those who most know these systems.” –Aurora Levins Morales
- ANTI-CAPITALIST POLITIC In an economy that sees land and humans as components of profit, we are anti-capitalist by the nature of having non-conforming body/minds.
- COMMITMENT TO CROSS-MOVEMENT ORGANIZING Shifting how social justice movements understand disability and contextualize ableism, disability justice lends itself to politics of alliance.
- RECOGNIZING WHOLENESS People have inherent worth outside of commodity relations and capitalist notions of productivity. Each person is full of history and life experience.
- SUSTAINABILITY We pace ourselves, individually and collectively, to be sustained long term. Our embodied experiences guide us toward ongoing justice and liberation.
- COMMITMENT TO CROSS-DISABILITY SOLIDARITY We honor the insights and participation of all of our community members, knowing that isolation undermines collective liberation.
- INTERDEPENDENCE We meet each others’ needs as we build toward liberation, knowing that state solutions inevitably extend into further control over lives.
- COLLECTIVE ACCESS As brown, black and queer-bodied disabled people we bring flexibility and creative nuance that go beyond able-bodied/minded normativity, to be in community with each other.
- COLLECTIVE LIBERATION No body or mind can be left behind – only moving together can we accomplish the revolution we require.
My personal thoughts on anti-capitalism are that it’s based on how capitalism has and continues to work in the US. It’s important to note that we don’t practice true capitalism in the US. That is a bigger and different conversation, but I agree with the anti-capitalist sentiment in relation to the social model of disability and the disability justice movement. My good friend reminded me of this today, in fact.
Regardless of any of this- human rights matter and we need to work together to achieve equity. Equity harms nobody! Nothing About Us Without Us 🫶