It is sexual assault awareness month, so let’s talk about prevention! We have curated various tools and resources from the Hub and our partners for you to use to shape your prevention strategies with people with disabilities in your local community, and with current, or future stakeholders.
Our intention is that this resource kit makes it easier for preventionists and advocates to design accessible violence prevention strategies to create structural and environmental impact led by people with disabilities. We invite you to dive in and enjoy this prevention resource kit brought to you by Indiana Disability Justice (IDJ). Get your resource kit now!
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.
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.
For many, part of everyday life with a person with disabilities is needing access to support staff to help with daily needs. That may mean services such as in-home staff, known as a DSP or Direct Support Professional. It can be recreational therapy, community staff, or even respite care.
As a DSP myself, I see a lot of turnover in the staff that help those with disabilities succeed. One of the things that is upsetting to me is having had saff that do not know what they are getting themselves into. They do not realize how high demanding this type of job is and end up quitting, leaving myself and clients without the proper assistance needed.
One of the things I wish they had is special education training on how to be a proper DPS. This would benefit both the staff and the client. Training can include having a nursing license or being a CNA. There is a difference between a 24 hour setting and a non 24 hour setting. It would be helpful for staff to understand the differences. Better trained staff would help prevent violence against people with disabilities. It would also help the client feel more comfortable with the staff helping them. It would also help them improve their advocacy skills and build confidence within themselves.
The state does not understand or see what support staff goes through every day and what we do every day for our clients. Having the support from the state could go a long way and really help the staff and client by having a better understanding and benefical training program.
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
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.
