RadicalRNAdvocate

My current experience navigating the vast world of disability benefits and community resources.

Honestly, I expected trying to get help was going to be hard. I am not upset really. I am just very concerned. If I am having this much difficulty as a Home Health RN. What about everyone else?

Since I am an AuDHD (Autistic and ADHD) person these challenges do not come without consequences. I had several meltdowns over the past 30 days. Where I just had to cry until I naturally stopped. Incapable of consoling myself or convincing my rational brain to please take over.

Meanwhile, I wished I had vacated my body and brain for a little bit. I wanted to leave until they settled their asses down. There is nothing like feeling you are a separate entity from your own brain and body. I have been told this is common for Neurodiverse people.

I have had to break up tasks throughout the day with rest and restorative activities like coloring and sleep. Many people have never experienced suddenly being unable to work. They think that it is a luxury to be home. It is not a luxury, it is a privilege that I have a spouse to help me get through this. It is a struggle in so many ways.

The first week was so bad I barely remember it. The second and third weeks are a little more clear. I spent an average of 2 hours on the phone or making calls every day. I also spent 4 hours looking into resources and sending emails. I was just trying to plan what I could do to keep my finances afloat.

Working all day for no pay.

Let’s explore what all this work has entailed. This will give you some ideas on what to look for if you need support.

I have contacted a few Autism organizations in Hawaii, the Office on Aging and Disability, and my insurance case manager. I also contacted a non-profit organization. The only thing that will pan out is SNAP (food stamps). (hopefully, fingers crossed). I am grateful for this possibility.

Not only am I trying to just get through the next month but also trying to plan for the future. None of my conditions are going to go away and if everything is this hard. I felt compelled to look into long-term disability.

The application process for SSI/SSDI is very complicated. It’s pointless for me to try getting benefits approved on my own. I did find this great book at my local library. It really is the best reference I have ever seen.

If you are applying or plan to apply, reading this book will walk you through the whole process. I encourage reading it even if you have a lawyer. I am waiting to hear back from a disability lawyer¹ that I contacted. This is not definitively what I plan to do. I just am unsure if I will manage to work again.

It is easy to see how, over the past four weeks, I have felt like giving up several times. Luckily, I knew to seek out some special people online. Where I knew I would feel seen, worthy, vindicated, and happy. Even if we mostly communicate through memes. Somehow I fell all these things.

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The disability community comes to my rescue.

Ranging from Instagram posts to blogs to Reddit discussions or a variety of other platforms, help is everywhere.

I have poured through amazing facts, amazing suggestions and lived experiences. I learned so much from so many people. I smiled. I cried. I laughed. I sat in gratitude.

If you feel stuck, simple hashtags on IG can be a huge help. Other social media platforms can also open a whole world of information. Some hashtags that I have found helpful are.

• Disability Justice
• Disability Pride
• Actually Autistic
• Neurodivergent
• Disabled
• Invisible Disability

If you have other hashtags that you use or like please comment them below.

This community was the reason I kept fighting against not only external ableism but internal ableism.

There were moments when the thoughts of me as a burden to my husband were racing through my mind. I also one day sunk into the thoughts of not healing the right way. That is why I can’t heal when I help others heal themselves.

Luckily, I remembered that none of this was true. That capitalism has conditioned my mind to believe these lies of my own unworthiness.

I was not and am not going to give into these lies. I am worthy. I am amazing, and I will move ahead. I will break through the ableism and sexism. I will have justice!

Justice, Disability Style

Disability Justice: “Disability justice is a social justice movement which focuses on examining disability and ableism as they relate to other forms of oppression and identity such as race, class and gender.^[1][2] It was developed in 2005 by the Disability Justice Collective, a group including Patty Berne, Mia Mingus, Stacey Milbern, Leroy F. Moore Jr., and Eli Clare.^[1] In disability justice, disability is not considered to be defined in “white terms, or male terms, or straight terms.”^[1] The movement also believes that ableism makes other forms of prejudice possible and that systems of oppression are intertwined.^[1] The disability justice framework is being applied to a intersectional reexamination of a wide range of disability, human rights, and justice movements” -Wikipedia

Disability Justice is formally a newer concept, but disabled people have been fighting for a lot longer than that. Judy Heumann² is a great example if you need a place to start with disability history.

Our community has always included many types of people who have multiple types of prejudice against them.

My “too well” or ability to pass as a normal, able-bodied, Neurotypical, basic white bitch is a privilege. It has also cursed me in the past and continues to do so.

People do not believe my queerness because of who I chose to love and marry. They don’t believe I’m Autistic because I am not Sheldon Cooper³. They do not believe I have a disability, let alone multiple. Because they refuse to believe in Invisible disabilities⁴

Ableism is a bitch. No matter who you are and where you fall into our community, it is a common experience. I can also tell you from being a nurse and a patient. Ableism is rampant in western medicine.

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Are you sure your pain is a 10?

I think about the countless hours spent going through my symptom journals over the past week and cringe. I aimed to find out when symptoms got worse or when I reached a new level of disability.

I also thought of it like Pokemon and I had to catch them (symptoms) all! So I would laugh and find moments of joy during this painful task.

This is necessary because if I do not have the data, I won’t get the care. I will also print out reports from my Visible device⁵. All of this work is because I have had horrible experiences before with providers.

Doctors often do not believe women, BIPOC individuals, and Gender -Queer individuals or discount our symptoms for anxiety. I have had this happen even after the provider knew I am a RN with 10+ years of experience⁶.

Sometimes, providers that do believe me are no better. They view each symptom or adaptive piece of equipment as a tragedy. But I see them for what they truly are.

My ability to adapt, survive, advocate for myself, and allow me to have what I need. I view them as badges of honor. As obvious signals of my strength, grace and beauty. No matter how much my symptoms hurt or devastate me in the moment. I am still proud.

As obvious signals of my strength, grace and beauty. No matter how much my symptoms hurt or devastate me in the moment. I am still proud

You should be proud too. You are a strong, beautiful, courageous, resilient, funny badass! Don’t let this capitalistic hellscape of ableist assholes convince you of anything different.

We can fight ableism together!

Do I have any formal support set up after fighting for 30 days? No, I do not. This demonstrates that we still have fighting to do. We still need to move forward as a community and support each other.

Knowing we all have something that hinders us day to day. We are faced with additional challenges in our activism. We need to plan for caregivers to accompany some of us. Packing food, meds, insulin coolers, and extra ice are just some examples.

I say these details not to discourage anyone. I say them because it means we need many individuals to share whatever talent they have.

Organizing, typing, research, and supply runs are all helpful. Making banners and other art pieces can get attention and inspire us.

Whatever you can do is enough. You are enough. You are welcome here. You are important. We need you!

For those of you reading this and smiling because you live this experience and love your community. Please take some time to comment on this post. Share what your community is about, and invite others to join your cause.

Together we would be unstoppable.

Footnotes:

1. Disability Lawyers should not ask for payment upfront. The typical cost is 25% of any back pay for benefits. Only if the person is approved and receives benefits. ↩︎
2. You can also look up the Capital Crawl and the movie Crip Camp. It is on Netflix sometimes to watch it. ↩︎
3. This is a character on the TV show Big Bang Theory. To read more about how the Autism Spectrum actually presents itself in Autistic people read this blog. I wrote it for an amazing company full of Neurodiverse people. ↩︎
4. This is not an affiliate link or connected to the author. ↩︎
5. I get no money for mentioning them. I just really am grateful for it and use it daily. I just also use the symptom diary because I am a book nerd and like paper. ↩︎
6. Remember doctors are there to help you and provide you with care. You can always ask for a new doctor or work on getting another referral to another provider. You have rights as a patient and as a human. ↩︎