Structural Ableism by Lee Goldberg

a person standing before hurdles
A person standing before hurdles.
Lee Goldberg’s Structural Ableism Essay Audio [transcript below]

I have several non-apparent disabilities which makes me more apt to experience Systemic Ableism because when people don’t see my disabilities they assume that I can do whatever society wants or what other non-disabled people in society can do. It is like judging the book by its cover only the cover looks normal when it isn’t.

The definition of Systemic Ableism is also known as institutional ableism which includes the physical barriers, policies, laws, regulations, and practices that exclude people with disabilities from full participation and equal opportunity.

I can give you examples that I have personally experienced and still currently experiencing of Systemic Ableism from the policies and regulations, the exclusionary practices, and the physical barriers angle.

The physical barriers that I am currently dealing with involves the use of facemasks by other people during the pandemic. Their facemasks prevent me from being able to understand what someone else is trying to say to me. I depend on lip reading as I am deaf. No one is willing to lower their facemasks just below their chin for the few seconds that it takes them to say a few sentences nor are the healthcare organizations are willing to provide their staff who deal with the public with clear facemasks.

My primary care doctor’s office is one of the worst offenders, and they are part of the Mass General Brigham medical organization in Boston. I stay with them because I have a really awesome primary care doctor and I would be dealing with this issue no matter where I go. I can’t tell you how rude people are when I carry around my deaf sign that says, “I’m deaf please remove your facemask so I can lip read, Thank You.” People come from around the world to get medical care at the Mass General Brigham. Their IT dept will not allow their own health care providers to have the ability to toggle their work Zoom accounts that they use for telemedicine visits which allows them to enable the closed captioning option. The healthcare providers have to go through the process of booking a CART (Communication Access Realtime Translation Services) person when there is already a shortage of CART people.

If their IT dept would allow their medical providers the option of enabling the zoom closed captioning, this would eliminate the extra time and effort of getting a CART person. I emailed each of my healthcare providers that I see on Zoom with a Zoom closed captioning cheat sheet on how to enable the Zoom closed caption option. The answer I get from each of them is that the Mass General Brigham IT dept doesn’t allow them to toggle their work Zoom accounts. This is an example of a barrier and a policy version of systemic ableism that is happening now by a world class healthcare organization.

Another systemic ableism is a deaf issue I currently experience is the inability to move the closed captioning placement on my own TV screen when I am watching a TV show. I know that I am not alone about this issue because I have read the comments written online by other deaf people who are frustrated with the same thing. I want the ability to be able to move the placement of the captioning to any part of my TV screen. Currently, only the TV stations can decide on the closed captioning placement on all TV screens and some of them put it in the middle of the TV screen which blocks out the show that I’m trying to watch. It’s very annoying.

Another Systemic Ableism issue that really gets me upset is that the SSA (Social Security Administration) has a system of policies and regulations and continues their discriminatory practices within their SSDI (Social Security Disability Insurance) program to this current day. This discrimination practices discriminates between the blind and all of the rest of the disabilities in terms how much the 2 disability groups can earn per month before losing their monthly SSDI income. 

For many decades and still to this day, blind people can earn an extra $990+ per month when all of rest of the disabilities cannot before they lose their monthly SSDI income. This is called SGA also known as substantial gainful activity. I have asked benefits trainers, policy makers and advocates how come this SGA discrimination still exists to this day. The answer I get is because blind people had a really good lobby and they got congress in the 1970’s and early 1980’s to write and pass legal and regulatory policies allowing this to happen. 

This SGA discrimination is another example of the legal, regulatory and policy aspect of Systemic Ableism all combined within one action. This is a major reason why most nonblind people including myself who collect SSDI disability are condemned to a life of poverty and get penalized for trying to do part time work. I can’t work more than 20 hours per week due to my various non apparent disabilities. I have the skill sets that puts me above the current nonblind SSDI SGA level.

Finally, another federal program that is administered by the Federal government in partnership with the states is Medicaid. Most people who have disabilities have Medicaid only because they don’t have the required employment quarters to be eligible for SSDI and Medicare. Medicaid is ripe with Systemic Ableism built into the structure of its program and the way it is administered. It limits where one can go, what type of healthcare they can get and the lack of access to health care due to its extremely low reimbursement rates to healthcare providers. 

People with disabilities have trouble accessing specialized care related to their type of disability such as Mental Health or specialized care that is related to their physical disability such as Cerebral Palsy, etc. because the doctors or hospitals will not accept the extremely low Medicaid reimbursements rates. Doing the unpaid extra time and administrative work that many people on Medicaid needs, is not reimbursable by Medicaid. It takes extra time to see and care for a person with a disability.

People with disabilities are often limited to going to the lesser quality hospitals and doctors because of the Systemic Ableism that is built into the Medicaid program. This causes people with disabilities to get lesser quality and standard of physical medical and mental health care. This difference in the quality and access to care makes it extremely hard for people with disabilities to live their public and private lives and to participate in society. This impacts all the major diseases categories across the board for people with disabilities who have Medicaid only whether its cancer or diabetes etc.

I hope my presentation gives you some insight into what Systemic Ableism is and how it permeates throughout society and how its entrenched in our daily lives most people don’t even realize it. This is parallel to what the black people in our country are saying about systemic and institutional racial discrimination.

Thank You,

Lee Goldberg

You can email me at leegoldberg@rcn.com.

ABOUT THE AUTHOR: Lee Goldberg

A headshot of Lee's cat Linus.
This is a headshot of Lee’s orange cat Linus.

I am a staunch advocate for the mental health peer movement. I have been involved since the early 1990’s. I started out my advocacy days working with Pat Deegan helping bring mental health advocacy into an independent living program. Pat provided me with the foundational knowledge about mental health and introduced me to the early days of the peer advocacy movement. From there, I worked in mental health in different direct care roles ranging from employment services to outreach supported services as a Peer Specialist. I have worked in direct mental health care for 30 years while serving on many statewide committees advocating for changes in the way mental health services are provided in Massachusetts.

Since the pandemic I have left direct care and will be training as a Behavioral Health medical coder. I plan on advocating for certified peer specialists to have their own behavioral health codes so they can bill both the public and employer-based insurance. Currently in some states peer services can bill Medicaid but not in all, they also can’t bill Medicare or employer-based insurance which is why there are no peer services currently for people who have those insurances.

I live in an apartment adjacent to the city of Boston with my orange cat Linus. Linus is 9 years old, and he is the love of my life. I enjoy going to local festivals and having quiet dinners with my friends.

Marriage Penalty for People with Disabilities By Kelsey Cowley

I want to talk about the marriage penalty for people with disabilities. Not a lot of people know about this because congress does not advertise it or make you aware of this. When I am talking about marriage penalty, it is about allowing people with disabilities to get married to someone with a disability on Medicare/Medicaid and SSI. The reason why that is so important to me is because I had to open my eyes when i tried to get married legally to my ex-husband who did not have a disability. People with disabilities need to be able to choose who they get to marry. It is not up to congress or the state. People with disabilities have equal rights just like “normal people”. What people with disabilities want is to have a normal life. That means to have a family, to have kids, and to be able to get married. There has always been a stipulation that they cannot have these things. That is why everybody needs to understand what it is like to have a disability and support us.

 

Editor’s note: When getting married people with disabilities often lose Medicare/Medicaid benefits necessary for activities of daily living. When marrying an able-bodied spouse, the state (Indiana) assumes that the spouse will become a caregiver and lowers the amount of care the spouse with a disability receives. A piece of paper and rings do not change one’s needs. This can cause undue stress on the marriage. Yes, married partners do care for one another but not in that way, every day.

The money a spouse with a disability receives can also be reduced or stopped altogether. This depends on many factors. If both spouses receive SSI, they may reduce each of their income to meet the maximum payment allowed. If only one spouse is on SSI, the income of the one not receiving benefits is counted towards determining the SSI payment, often times reducing or eliminating it. SSDI depends on whose account the benefits are being drawn from. If a person with a disability is drawing on their own earnings, nothing will change. However, if the receiver is drawing off of a parent and their spouse does not receive benefits, the SSDI payment may be lost. This information is taken from https://www.specialneedsalliance.org/the-voice/what-happens-when-persons-living-with-disabilities-marry-2/

ABOUT THE AUTHOR:

In this picture, Kelsey has short red hair and brown and blue glasses. She is in a lime green room and smiling broadly
In this picture, Kelsey has short red hair and brown and blue glasses. She is in a lime green room and smiling broadly

Hi, my name is Kelsey Cowley and I have been a long time advocate for people with disabilities. I am a person with a disability also but what people don’t know about us is that we are humans too. That is what people who have never interacted with people with disabilities needs to know.

Did I Say That was OK with Me? Understanding Consent and Boundaries- by Sarah Meyer

Content warning: This article mentions instances of abuse and sexual assault. If you are a victim or survivor of sexual assault and are in need of support, you can call the National Sexual Assault Hotline provided by RAINN at 800.656.HOPE (4673).

Please note: This article was originally published by the National Federation for the Blind.

I’m standing at an intersection, listening and analyzing the flow of traffic and waiting for the safest moment to cross. I hear the parallel traffic and, with my cane out in front of me, I confidently begin to cross the street. Out of nowhere, a “concerned citizen” grabs my arm and says, “This way. Let me help you.” I feel the familiar flush of anger and shame, the tightening of my throat, and the clenching of my stomach. My muscles tense as I wonder what gives this stranger the right to not only assume that I am incapable of crossing this street without their help, but to touch me without even asking first? Do I pull my arm free? Do I say “No thanks, I’ve got this”? Do I just go along with it because I’m already so exhausted from the ongoing onslaught of microaggressions, constant accessibility barriers, and daily harmful assumptions that non-disabled people know what I need more than I do? In this moment in the middle of the street, unwittingly entangled with someone I don’t even know, I feel powerless. No response feels completely right, and I don’t know the best way to reclaim my power and confidence.

As blind people, we are all-too-familiar with this scenario. It might be when we encounter construction, new barriers in a familiar environment, or when we are in a store, bank, or restaurant. We have the shared experience of unwelcome interference by strangers, acquaintances, and even friends and family members.

Imagine a recent incident when you may have experienced some of the sensations, emotions, or thoughts that I mentioned above. These are all signs that someone has neglected to ask for your consent and has violated your boundaries. In order to understand consent, we need to talk about boundaries.

What are boundaries?

Boundaries are:

  • Limits that express respect for our own needs and the needs of others.
  • Unique to each person
  • Invisible lines that separate your physical space, feelings, needs, values, goals, and responsibilities from those of others.
  • Physical, mental, emotional, social, sexual, spiritual, relational, and material.

Understanding and defining your boundaries helps you to know where you end and others begin, and enable you to distinguish between acceptable and unacceptable treatment from anyone you encounter.

We all have boundaries, whether we are aware of them and are able to articulate them or not. Setting healthy boundaries requires self-awareness, empathy, and respect for our own needs and the needs of others. When we do not learn about boundaries as children, we move through the world without an understanding of our own limits and the ability to set them and are at a greater risk of experiencing emotional or physical harm.  

Why does consent matter?

Consent is not just the absence of a “no”; it is a freely given, enthusiastic “yes.” As people with disabilities, our boundaries—even if we are able to articulate them—are so frequently ignored that it can be difficult to understand what enthusiastic consent does and does not look like. With every unsolicited touch from a stranger, teacher, or parent (even if it is done seemingly for the purposes of instruction), we are taught that our bodies do not belong to us. When consent is so rarely requested from us in a non-sexual context, it is no wonder that people with disabilities are at a significantly higher risk of experiencing sexual or intimate partner violence.

Sometimes, I have a visceral reaction to the frequent boundary violations committed by others because they remind me of other times I felt helpless, of the experiences that have given me the title of “survivor.” In a few milliseconds, I am no longer in the street with a stranger; I am a small child being sexually and physically abused by a family member that I trusted; I’m a young adult, hiding from my drunk boyfriend who is breaking furniture and yelling at me; I am at Washington Seminar and national convention, feeling hands on my skin that I never asked to touch me; I am at another student’s apartment after a party at the training center apartments where I have come to search for my independence, but instead wake up to find a man raping me while I silently cry. The same thread woven throughout these experiences is the thread of powerlessness and self-blame.

What I know now, after years of therapy and learning about boundaries and consent, is that I was not to blame in these situations. Yes, my power was momentarily taken from me, but that does not make me responsible. When I was a child, I could not consent simply because I was a child and had not been taught that I had the right to boundaries and autonomy. When I was assaulted as an adult, nothing I did gave someone the right to take advantage of me without my consent; this includes going over to the student’s apartment and consenting to kissing. Consent is ongoing, can be withdrawn at any time, and consenting to one activity is not a license to advance to another. Now that I have been taught what healthy boundaries look like, I’m better equipped to practice self-compassion, and am empowered to teach others their importance so we can build a culture of consent. As we work towards that, hopefully fewer people will experience the trauma that I have.

What does it look like to set boundaries or ask for consent?

I recently attended an intensive training for a form of trauma therapy called EMDR (eye movement desensitization and reprocessing). A coach who was assisting me by describing training videos asked me if I would like to touch her hand and arm as she demonstrated the signature actions that are necessary for this type of therapy. If my movements were incorrect, she asked me if I would be okay with her touching my hand and arm to make an adjustment. She asked if she could either tap on my knees or cue me verbally to tap on my own knees so I could learn the pace and duration of the tapping, which is essential to my understanding of how to deliver this modality as a blind therapist. In all of these instances, the coach sought my permission and feedback on my comfort level with her actions. If I had said “no” at any point, I am confident that my boundaries would have been honored and a different solution discovered.  

My consent, needs, and autonomy being valued in these ways helped me to feel seen, heard, and valued. As I reflect back on this experience, I recognize how strongly it contrasts with the feelings of shame, anger, and powerlessness I experience in those all-too-common scenarios when someone swoops in and commandeers my body, time, or sense of control without my permission.

Maybe next time I am crossing that street, and a well-meaning person grabs me to provide help I do not need or want, I’ll recall this experience where my boundaries were beautifully honored and my consent was desired. Maybe I’ll remember that I do have power, and that it is never rude to expect others to respect my body and personhood.

Just because we’re disabled, it doesn’t mean we don’t have the right to consent, autonomy, and our own decision-making power. This applies throughout the entire process—from sexual misconduct or other consent/boundary violations, to the sharing and use of our survivorship stories, to our path of processing and healing from trauma and boundary violations.

It is never too late to start the practice of honoring your own and others’ boundaries. Every time you set a boundary and someone respects it, and every time you ask for enthusiastic consent from another, you are both healing the wounds in others and also healing your own.

ABOUT THE AUTHOR: Sarah Meyer

Sara has pale skin with long reddish hair. She is wearing a black blaz. She's smiling.
Sara has pale skin with long reddish hair. She is wearing a black blaz. She’s smiling.

Sarah Meyer is a multiply-disabled white woman who is passionate about mental health, disability justice, and advocating for safety and inclusion for all. She obtained a Bachelor of Arts in Biblical Literature with a Minor in Psychology from Indiana Wesleyan University in 2011 and a Master of Arts in Clinical Mental Health Counseling from Ball State University in 2020. Sarah currently resides in Indianapolis, Indiana, with her guide dog Edwin and her cat Lumi. She enjoys reading, singing and playing piano, spending time with family and friends, exercise, and outdoor activities.

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.
(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.

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.

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

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 walker with her head cocked and blond highlights in her hair. She has piercings and tattoos.

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.