It is estimated that 80 to 90 percent of Deaf and hard of hearing people who have psychiatric disability are not receiving treatment. There are severe barriers to accessing mental health treatment for the Deaf, because every area does not have an organization like the League for the Hard of Hearing. What the average Deaf person will experience in accessing mental health treatment is a serious lack of availability of any treatment centers or options that are accessible to them or who understand them. Even picking up the phone and making that first call- this can be hard for Deaf people who may not have access to the necessary technology one needs to make calls. In the modern world, many people do not have land-lines to use a TTY. Deaf people text and do message chats using a cell phone. Calling a medical office frequently results in having to listen to an automated menu and voice prompts. When I take my hearing aids out to use the phone, I can no longer hear myself speak. When an automated menu requires me to speak, it often cannot understand me. Automated menus are not designed with Deaf people in mind and are a huge barrier to accessing treatment. I do not always have a sign language interpreter available whenever I need to make a call, either. Many hearing people think that my interpreter is permanently sewn to my side and goes everywhere I do. That is not how this works. My interpreter is assigned to be my interpreter at work and in school. This does not include assisting me in making personal calls. That is not my interpreter’s job. Some hearing people might think, well they should just do that anyway. And my interpreter has, but there are professional and ethical boundaries that interpreters must follow or they could lose their jobs. It would be great if medical and mental health providers would have a live-chat option on their website that connects to an actual person, not a robot, who works at that office. This would not only help Deaf people, but many people with and without disabilities who for whatever reason cannot use the phone. For clinicians to understand this, there needs to be statewide education and requirements so that Deaf people’s rights to access are being upheld.
A serious issue for Deaf people is the language barrier. Most hearing people know little to nothing about sign language whatsoever. It is truly amazing the things that I have heard from hearing professionals who work with disabled and Deaf people. The lack of education is appalling. It is hard to even discuss this issue without offering a primer in sign language, since hardly any hearing person understands it, and many make erroneous assumptions. I have written about sign language before, here. Without recapping that entire article, let me again say that there are different kinds of sign language. One issue is that the clinic requesting an interpreter to come in and interpret probably has no idea that there are different kinds of sign. They have no idea the level of skill of the interpreter they are getting, and if that interpreter is skilled at using the type of sign the patient needs. That is why education for the entire office is a big help. Some Deaf people, like me, use more English-based sign. I grew up oral, which means I was taught to speak and to rely on my hearing aids. This is not ideal, but many Deaf people are raised this way. I learned sign language at age 14. Because my first language was English, I use a more English-based sign, and my interpreters know this. American Sign Language is not word for word translation of English. It is another language.
Some Deaf people had a different experience. They grew up using sign. They may have been born into a Deaf family and community. People like this often use a more “cultural ASL” style of sign. This is not English-language based at all. A Deaf person like this needs an interpreter who understands that they need to use more ASL style of signing, as it is called. If a clinician is serious about treating a Deaf patient effectively, this component is crucial. It is important to think of Deaf people as bi-lingual or multi-lingual. They use a different language, and spoken and written English may not be their first language or their strong suit, just like anyone who uses another language, and languages have dialects.
Another problem that can arise in a clinical setting is having a Deaf patient who does not have language use due to being deprived and isolated their whole lives from effective communication. This especially can happen to Deaf people who are intellectually or developmentally disabled. It is not an uncommon experience among the Deaf to be deprived of communication, whether that is sign, spoken language, or written language. This can cause clinicians to misdiagnose these patients with psychosis or another issue, because the way that person communicates mimics word patterns of psychosis.
As an example, I had a friend in high school who was deaf and also had cerebral palsy, and used a wheelchair. She was given up for adoption and went to a group home when she was very young. In the group home, she was just left in the corner. No one knew she was Deaf until she was 13 years old. No one knew how to communicate with her until she was adopted by a couple fluent in sign and put into a school and given interpreters in the classroom. Everyone just thought she was intellectually disabled and they did not try to communicate with her (which says a lot about how people think of the intellectually disabled). This is the kind of thing that can happen to Deaf people.
When Deaf children are not given access to the type of communication they need, this can lead to a lack of socialization. It is not uncommon for disabled people in general to not be talked to at all about sex, which is a typical part of human development for everyone. It is important to remember that a Deaf person will not just pick things up. We cannot overhear anything. Deaf and many disabled people need direct, accessible communication. And many able bodied people are uncomfortable with that. So this issue might be why a Deaf patient has been acting out and being inappropriate. When someone has not been communicated with in a language they understand, or if they did not develop much use of language, behavioral problems can result. For this reason, Deaf people can become embroiled in the criminal justice system. This is another area where a Deaf person may come into contact with a mental health professional such as a psychiatrist.
Understanding and treating Deaf patients also means learning about Deaf Culture. While language is crucial, culture is another component. Hearing people often are unaware that Deaf Culture exists. When a group of people have a particular experience of life, they have a shared culture. Deaf people have shared culture, language and experiences, even if we grew up in different ways. I may use English-based sign but I still have a shared culture with someone who uses cultural ASL, and I can communicate with them, even though it can be a challenge, depending on the person. There are things about being a Deaf person that make us think differently and experience the world differently than hearing people. An example is that often hearing people are vague, use euphemisms, or dance around the point. In Deaf culture that is considered extremely rude, inaccessible, and offensive.
Another aspect of Deaf culture is that we may have grown up, like disabled people, receiving services from the state, taking the city bus, going to an audiologist and a speech pathologist, wearing hearing aids, and so on. That is a shared experience that able bodied people do not have. There is disability culture, there is Deaf culture, and there is the combination of the two that people experience. I may have a master’s degree and a professional job but I am used to being in spaces with disabled people, many of whom are poor (as I was for many years), receive services (as I have and sometimes still do), rely on medicaid transport (I also do not drive), and other things. When I talk to able bodied people, they are like, why don’t you drive?! When I talk to disabled people, it is not considered strange, it is common. (Although many Deaf people do drive). Understanding disability culture is understanding that people often do not drive, and this is not because they are childish (as I have heard), lazy, or stupid. The point is, I do not have to explain this stuff to other Deaf and disabled people. We just get it.
Creating Infrastructure for Deaf Mental Health Services, the Arkansas Model
The reality for Deaf people who need mental health treatment in most areas is that nothing exists for them whatsoever, and people who work in the mental health system do not even understand that there is a need to serve Deaf populations. Recently, in my graduate Mental Health Policy class, a professional presenter told me that she attempted to communicate with a Deaf psychiatric inpatient in a hospital during an emergency situation by trying to look up signs on Youtube. This is entirely unacceptable and illegal. This person had a law degree yet she thought this was acceptable and even commendable.
Arkansas is way ahead of the curve and recently, Governor Asa Hutchinson signed into law HB1471, which establishes a bill of rights for Deaf mental health patients and outlines a plan for treating mentally ill Deaf and hard of hearing people in the state of Arkansas. You can read the bill here. I was very impressed with this bill and I think it should be a model for all states. My concerns as a professional and my experiences as a Deaf person are addressed in this bill. The language and cultural barriers, the high need for treatment among Deaf people, and the fact that there is not enough culturally and linguistically appropriate treatment out there for Deaf people are all mentioned.
The bill requires that there are certain standards to be met for those working with Deaf psychiatric populations and establishes that there will be a Deaf Services Coordinator who has a higher degree, to set up a state-wide system of care for Deaf and hard of hearing people. The bill requires that the Coordinator organize an advisory board that INCLUDES people who are Deaf and hard of hearing (at least 51% of the board must be so), sign language interpreters, mental health professionals, and licensed educators for the Deaf. The Coordinator will oversee services being provided to Deaf and hard of hearing people in Arkansas, and be notified when accessible and culturally appropriate services are being denied.
The bill allows a Deaf patient to choose which interpreter works for them, and to refuse to work with any interpreter. If an interpreter cannot immediately be present, something like Video Remote Interpreting (VRI) has to be used. Deaf people know that VRI is not at all optimal, but the bill puts interpretation first, and emphasizes the need for interpreters throughout.
All U.S. states need to look at what Arkansas is doing and follow suit. Disability rights are civil rights, and culturally and linguistically appropriate mental health services are the only way that the disparity in treatment and high levels of untreated mental health issues among Deaf people will be addressed.