I AM DEAF AND TERRIFIED TO LEAVE MY OWN HOME…
I am reaching out to anybody who might be able to help me. I am profoundly Deaf, almost blind and have been house-bound for six months now, due to circumstances which have unfolded over the past two years. I suffer from Agoraphobia with Panic Disorder and Post Traumatic Stress Disorder, as well as Depression. Lately, I am terrified to the point that I have pondered that Death might be better, but I am determined not to let Surdophobia and Audism force me to submit to such an ending.
In 2014, I contacted the World Federation of the Deaf, as my world was turned upside down when I woke up to silence. I was diagnosed as profoundly Deaf and have not heard anything (except irritating tinnitis) ever since. I have also had constant pressure inside both of my ears. I was initially told that my only option was to have bilateral cochlear implants. As I did not know any better, and presumed that doctors would only have the patient’s best interest at heart, I agreed that this would be the way to go. I underwent many more tests at TAYS Hospital in Tampere, Finland, and the surgery was scheduled for March of 2015.
The surgery for the cochlear implants did not go ahead. A final test, where I was put under extreme duress (Locking somebody in a dark room for two hours with no instruction, no interpreter, wires stuck to my head almost induced a panic attack of monstrous proportions – the hospital had been aware for five years that I suffer from Agoraphobia with Panic Disorder and PTSD, but it did not stop them from doing this to me). When the terrifying test had concluded, I was then led to the room of the audiologist, where both my husband and I were abused and I was called crazy, a liar and many other names before we were thrown out. According to this woman, I could hear perfectly because my brain was healthy and my ears were healthy. I asked… “If this is the case, why can’t I hear anything?!” Her response: “You are crazy. Get out of my office.” This began an avalanche of hell for my family and me.
When I was diagnosed as profoundly Deaf in November 2014, both my husband and I were terrified. We know, better than most, that a marriage cannot survive without communication. I had learned basic Finnish so that I could talk to him. He learned basics of Australian English so that he could talk to me. My application for citizenship had been submitted and was pending decision. After the World Federation of the Deaf referred me to the Finnish Deaf Society (Kuurojenliitto), I discussed my situation with them. My husband had asked how we can communicate and asked if there was a way to learn to sign. Each of us are on an annual income of 6,000€ per year. We were told that at a cost of almost 4000€, just ONE of us could learn how to sign at the Deaf School in Helsinki. Not only was this financially unattainable for us, but quite useless as we needed to know how to communicate with EACH OTHER, meaning that it would cost us 8000€ to learn how to sign. Barely able to meet rent and our bills already, we had no choice but to look elsewhere for a solution. Having heard of our situation, a Deaf Linguistics Professor of Sacramento State University (Dr William Vicars) volunteered to teach my husband and I BOTH for free, in order that we can learn to communicate once again. My husband and I now use American Sign Language at home and it is our sole communication language.
Shortly after the incident with the audiologist at TAYS Hospital in Tampere, Finland, I tried to catch a bus so that I could meet my husband in the city. It was the first time of my catching a bus without being able to hear. Prior to losing my hearing, I had caught the bus on an almost daily basis, without incident. On this particular day, however, I boarded the bus, swiped my ticket, proceeded to walk up the aisle to find a vacant seat and wondered why people were staring at me as I was doing so. A hand came down on my shoulder from behind me, almost knocking me off balance (I use a walking stick and have done for almost 20 years). Assuming my ticket had not beeped, I reached into my pocket as he dragged me to the front of the bus, thinking that is what he wanted me to do – reswipe my ticket (which was loaded with over 50€), but was instead physically thrown from the bus, landing on my butt in the snow next to my walking stick. As I looked up, the driver had climbed back into his seat, slammed his little door before slamming the bus door and driving away, leaving me on the ground at the bus stop as a sobbing mess. That is the very last time I had ever caught a bus.
I have applied to KELA (the people who issue Deaf and/or blind) with an interpreter, as I was entitled by law to have a certain amount of hours with an interpreter each year in order to live with dignity and in an independent fashion. This application was denied. An appeal was lodged, which was also denied. Several appeals were lodged, new applications were lodged – all denied. My husband and I approached Legal Aid for help and, after hearing all the facts, decided to help us get the interpreter which we so badly needed. As of last week, Legal Aid’s application was also thrown out, bringing my hopes of communicating with the outside world to an end.
I purchased small whiteboards not long after being diagnosed as profoundly Deaf, in the hopes that I could at least write things to the person I am talking to and they could reply the same way. Unfortunately, on each occasion of attending a doctor’s appointment, the doctor pushed away the whiteboard, stood right in front of my face (about 10cm away) and flapped their lips, demanding I understood what they were saying. The only thing this achieved was my knowledge that they needed a breath-mint. I cannot lip read. I have taken classes in learning but failed. The catch here is that a doctor will not see or treat Deaf and/or blind patients without an interpreter present. As a result, I have been without medical help for around one year so far, regardless of kidney infections, uterine discharges, chest pain, dizziness, odd bruises, extreme pain in my fingers and the pressure in my ears becoming worse. My lungs are so weak from pneumonia, bronchitis and chronic asthma that I wear a surgical mask when people visit.
The last time we went to see a doctor (my husband accompanying me because of the ear problems), the hospital responded to the doctor’s referral with: “We refuse to see that particular patient.” As a tax payer, I was baffled and shocked, as was the doctor who had referred me. He had never before encountered such a thing. But he had met a dead end, and suddenly understood what my husband and I were talking about in relation to me, as a Finnish citizen and a Deaf person, being denied medical care.
My husband and mother-in-law then escorted me to the KELA building to ask them (in person) why my application for an interpreter for the Deaf was constantly being denied. I instructed both of my family members not to speak at all during the interview, as the purpose of the interview was also for KELA to see how impossible it is for me to live with dignity and do anything at all independently. The result of that visit was a shock to all of us, when KELA demanded that we leave the building because they had called the police. Why had they called the police? They advised that they had called the police because the Deaf woman sitting in the middle (me) talked too loud. Accepting their response, I advised (audibly) to my husband to please contact the media immediately, as I would like them to capture the moment that police drag the Deaf woman away, having been arrested for talking to loud when begging for the rights to an interpreter. The KELA staff then admitted they had not called the police – they just wanted us to go away.
This brings me back to my situation. I have seen how Deaf are treated in Tampere, Finland – not only on busses and in government buildings, but also by doctors, audiologists and more. I am terrified to leave my home. My panic attacks are out of control. The only state-funded psychiatrist which would come to my home was surdophobic (she looked at me with disdain, told me to “stop with the Deaf thing, instructed me to stop using whiteboards, demanded that I go into a psychiatric institution because I was obviously crazy). What did not shock me is that she was assigned by TAYS Hospital of Tampere, Finland. At that particular meeting, she looked at me and talked to me like I was a piece of gum stuck to the bottom of her shoe. She diagnosed me as disassociative because my mother-in-law had brought her computer to type to me what the psychiatrist was saying. When the psychiatrist spoke, I looked at the computer screen. This justified her disassociative diagnosis – that I would not look at her when she spoke.
I have written and published a book about all of the events which led to my becoming house-bound. Twice in the past six months, I have been suicidal. This terrifies me. I do not want to die. I would love nothing more than to leave my home and feel safe, but I know what is waiting for me when I do. The only people outside my family who show any signs of decency when I am communicating with my husband are the shop-keepers at the local store. Oddly enough, I miss them too.
I have been handed down from the highest level, having contacted Finland’s President and Prime Minister, both of whom told me to speak to KELA about it because it is not their job to intervene. I have spoken to the World Federation of the Deaf, who passed me off to Finnish Deaf Association, who (in turn) passed me off to the Deaf/blind Association of Finland and the Social Office (Disability Services). I have approached KELA directly, which resulted in threat of arrest for talking too loud. I have asked Legal Aid to intervene, only to have their attempts being thrown out of appeals court.
I don’t want to encounter a third day of being suicidal. While I may only be seen as Deaf / almost blind / useless / trash to the audistic majority of professionals that I have encountered, I am not useless and I am not trash. I am a human being with a past of domestic violence and the loss of a son. I am somebody who had no thoughts about what Deaf people go through on a daily basis until I became one of them. I am somebody who is tired of being passed off, ridiculed, mocked, dismissed… and tired of having my human rights thrown back in my face and being forced to live without any dignity.
For the love of anything decent that is left in this world… please stop dismissing me. I once thought of Finland as an incredible country who cares about the environment, human rights, mothers and their babies, animals, and everything else that is precious in this world. I never, in a million years, would have suspected them of being a country who are so cold and cruel to Late Deafened Adults such as myself. Please don’t let me die.