Domestic and Sexual Abuse in People with Disabilities
Editor's note: Content warning - This article includes experiences with sexual assault, domestic abuse, and violence.
I am former Certified Domestic Abuse Advocate of 10 years, and I also have experienced abuse myself. Unfortunately, specific information on how often a person with myasthenia gravis (MG) may experience abuse is not available online - the information available is for everyone who identifies as having a disability.
To help others understand what abuse might look like in a person with MG, I will use my own personal story. If you have read my bio, you know that my MG symptoms started at the age of 10.
They progressed slowly over the years, and I did not get diagnosed until I was 58 years old. So, for me, the abuse I experienced started after my symptoms started, and before knowing I had myasthenia gravis.
Working as an abuse advocate
As a domestic abuse advocate, the first thing I would do after domestic abuse was reported was complete an intake form. Due to the personal information, this was for in-office use only. Therefore, victims who have reached out can never be identified.
Abuse Advocates have strict guidelines on the questions that they can ask. Any questions about a specific medical condition is considered discrimination. But I can tell you that over 60 percent of the people I personally worked with shared that they identified as having some sort of disability.
What I endured
In my experience, the abuses I endured came from people who were close to me or who I relied on for care with my MG. My abuse came from a significant other, health care providers, religious leaders, bosses and coworkers.
For example, as a child, an adult caregiver forced me to wear a paper sack over my head with a smile drawing on it because I could not smile correctly due to MG muscle weakness. Also, as a child I had numbness in my hands from the MG and I was forced to handle boiling hot potatoes barehanded, on a regular basis.
Because people did not understand my MG symptoms, I was verbally and emotionally abused with comments like: "You are lazy, you cannot do anything correctly", "Everything you make is messy", "You don't make enough money", "You are an embarrassment", "You cannot talk with anyone else but me."
My experiences at work
At work, there was one time I started into a flare. My boss and coworkers bullied and yelled at me ... this went on for 2 months. On top of being made to do things physically beyond my ability (while needing a neck brace and a walker), I was told I was making up all my medical conditions!
Abuse in relationships
I felt that because of my MG, others did not allow me to be fully independent. In one domestic relationship, I was not allowed to have full access to my own money in the bank. Buying clothing and other necessities was not an option.
I was not allowed to hang out with friends or go places on my own. I was not allowed to make major decisions, like buying property, cars, remodeling, or choosing where to go on a vacation. I even once had a bullet shot 6 inches from my head but I was told it was to keep me safe. After that time, I felt this person was trying to control me because they did not want me to believe I could take care of myself or make my own decisions with MG.
These were some other things that happened in that domestic relationship. I was strangled, I was held in rooms and not allowed to leave, and I was not allowed to take part in learning new skills because of developing disabilities. I was later told by the same person that I should let them be my payee for disability! We weren't even together anymore.
I was raped by an EMT when my muscles were too weak to move. The person who raped me told others I was easy and like to be hit for the pain
Victims are not weak
In my experience, victims are not weak! The victim is mentally and emotionally stronger than the abuser. As both someone who has experienced abuse and in my role as a domestic abuse advocate, I’ve seen how abusive people want their victim to feel worse than what the abuser is feeling about themself.
I've also noticed that the people who commit abuse portray themselves to be a very upstanding person to the public. There is so much more to abuse that this. Just like MG looks different for everyone, so does abuse.
If you or someone you know needs support, reach out for help by calling the National Domestic Violence Hotline.
Have you taken our MG In America Survey yet?