I want my childhood back!: Finding the Courage to Speak Up When Others Strike You Down

Last Updated on October 3, 2023 by sensation-experience

Okay, y’all, time for a little retrospect before checking in on how things are going so far. There are lots of things I should have definitely had access to a long time ago, but without knowing the language or the right person to talk to, I kept hitting dead ends for many a-year before finally being given a reprieve. But from what I’ve read, if you feel that a problem is too important to not go unignored, but other people find it easy to dismiss it because they feel that it is not what it seems, then you should continue to find someone who will really take you seriously and take the time to hear your story and make sure that they know how to address it. And, I have to say, that when someone has a combination of physical or sensory disabilities that people can see right away, but you also have invisible disabilities that people can’t see, it’s easy enough for them to invalidate those experiences and struggles that go on inside and say that you do not need additional support than what is already being offered. That was certainly the case for me, and I would like to tell y’all about it, so as to hopefully prevent others from having the same struggles. Just look at how bad things really got in Oregon.

Although there is no such thing as an instruction manual on how to help people with multiple disabilities who may also have mental health diagnoses at the same time, I sincerely hope this post will serve as a roadmap for building future systems moving forward. But because of the imperfections of our current systems, a lot of people with physical and sensory disabilities are denied mental health support,and that needs to change!

Going back, back, and back

When my brother and I were but nine and seven years old, respectively, we both got along pretty well. I enjoyed climbing atop his back to see if he could give me a piggyback ride. I was slowly becoming aware that there was an inexplicable difference between the two of us, but I knew that he didn’t talk as you or I would. Instead, he resorted to other forms of verbal stimulation, such as laughing, hooting, grunting, and more. There were a few occasional times when one or both of us got mad of each other’s presence, though, and my brother usually let me know this by violently banging his head against mine. In later years, this was replaced by scratching, pinching, and biting. He especially took pleasure in jumping up and lunging at the nearest person, grabbing them, and sinking his teeth for about a second before releasing them. But the worst has yet to come. He even bit me on my left arm, and I had slept right through it, although I wondered why it felt sore upon awakening, and that’s when my mother told me what had happened.

For the longest of time, I was not aware that my parents were having domestic violence issues, although my mum once told me that my dad both abused her and my brother because he didn’t like having a son who couldn’t communicate with him. So, when my mother officially divorced my dad in 2005, my memories of the fun evenings we used to have started to gradually fade away. Let me tell you that when school let out for the day, especially during the springtime between 2000-2004, I excitedly looked forward to having him pick me up and drive me to where he and his new girlfriend were residing in a neighbouring part of town. I relished and savoured every moment we went shopping, going to the park, eating fast food, and more. But that all soon came to a halt several years later, and going to his house was then seen as a luxury. This was probably because he became a workaholic and needed to support his new family, so I somehow ended up in the backseat, while I was forced to remain with my brother and mother. But if there was one thing he was good at was driving in freeway traffic, a skill that my mother was clearly lacking. This was extremely useful, as he sometimes drove me to and from my ten-month transitional programme several years later. My mum just couldn’t wrap her head around knowing which on and off ramps to use, which exits to turn to, plus she doesn’t have patience to learn how to use a GPS.

Good-bye, stranger

Sometime in Summer of 2001, my mum introduced me to a lady whom at first didn’t favour me in the least, though I remember not the reason. She, my mother, and I were all convened in our back yard of an apartment complex that we had previously moved into, which had a nice stout tree in the middle of it that my mother used to rig up a board swing for me to seek self-amusement whenever I got bored. I kept interrupting my mother and this person by constantly telling her bye, until at last she left. I thought that was surely the end of it, but she soon came back. I think I met her when my mother decided to drop us off at a hotel on a Thursday afternoon, where she evidently went to attend a Mary Kay meeting. The lady ended up taking my brother and I on a long walk, but not before I urged her to use the popcorn microwave that was conveniently parked near the vending machine. Then we either sat on a huge boulder and watched the planes take off (we were close to the privately-owned airport), or if my mother had left the door unlocked or had given her the keys, then we climbed into the Yellow Ford Thunderbird that my mother had at the time and waited for her meeting to adjourn.

For a while I wondered what her business was in coming every week to accompany us, and I came to the conclusion that she must’ve been a babysitter or something. It turned out to be near the truth, though I didn’t learn the real answer for several years later. However, one afternoon when I came home from school, I found my mum talking to another lady who I came to recognise as being my brother’s helper. She didn’t tell me until nearly the same years have passed that she was actually his case manager, but I knew that I so much wanted a helper of my own, as well. So, I innocently broached the subject with them both. Interestingly enough, she told my mother that I was really smart and intelligent… pretty much having the combined intelligence of both of them, so I didn’t need someone to work with me. I was, like, Okay, and I quickly dismissed it from my mind. That happened sometime when I was around seven years old. Therefore, I learnt that the babysitter was actually a personal support worker, who was being paid by the state to work with my brother.

Still, I felt like the lady who came to look after my brother, and sometimes her husband, who came whenever she wasn’t available, also looked after me as well. This was more so whenever my mum, the other lady, my brother, and I all went out. Somehow, my brother always preferred my mother over anyone else, so I was obliged to go guided travel with the lady. When I was old enough to understand what was really going on, I somehow felt uncomfortable that she was actually being paid to look after my brother, but she was the one who provided me with her eyes, and sometimes her ears, to help me navigate my unfamiliar surroundings. This was, of course, after my audiologist confirmed that I had a genetic disorder that would gradually eat away at my hair cells, thus causing me to slowly lose hearing over time. By the same cause, I gradually lost the ability to perceive fine light cues, such as when it bounced off reflective surfaces, perhaps in a different manner than its source. I surely hope that the recent emergence of progenitor cell activation will lead to a cure.

Zzzz, Zzzz, wake up!

Despite having light perception, I sometimes managed to turn my sleeping schedule around, so that I was up all night and extremely tired at school. Perhaps this was why I never remembered capturing minor details about the lessons we were taught. I often got startled into wakefulness whenever I felt my head nodding down, and I instinctively jerked it back up. Still, I managed to get settled into a routine that managed to work for me, even though I didn’t have a vibrating alarm clock as of yet. For that and probably a few other reasons, I usually ended up missing the school bus once or twice a week. The school even asked my mother to acknowledge that I have completed all my exercises by attaching her signature to the front page, which was always in print. I also noticed that it was easier for me to regulate my schedule when it was warm and sunny than when it was cold and rainy. Still, I occupied every school day with waking up, eating a good breakfast, going to school, going to recess in primary school, then lunch, followed by more recess, and then going back home. Depending on the day, my mother, brother, and I would all accompany her to run errands, so having that kind of activity helped my brother and I stay awake for nearly sixteen hours, thereby leaving us with eight hours to get some sleep. It wasn’t until I got into junior high school that I got a timetable of organized classes, though. Sometimes, especially during summer and winter vacation, I accompanied my brother to the Oregon Health and Science University’s Occupational and Physiotherapy gym, where someone helped get my brother engaged with various sensory activities.

Since light exposure is a key component in helping your body secrete melatonin at the right time, blind people, or people who live in the dark all the time, end up developing odd sleeping habits that do not align with their environment. This is generally covered under the umbrella free-running sleep. In fact, there is a certain colour in the visible light spectrum that is responsible for suppressing the production of melatonin entirely, and most sleep doctors recommend at least twenty minutes of bright light exposure as soon as you wake up. This might be a sort of hit-and-miss for someone with no light perception, though some people claim that even if you can’t see it, the cells in the back of your eyes might respond to it and communicate the message that it is time to wake up.

Where am I?

One of the things that blind and low-vision students often go through is orientation and mobility, which, in itself, is its own expanded core curriculum that aims to help students compensate for their lack of sight by using auditory cues to know when it was quiet enough to cross a stop-signed intersection or rely on the nearest surge of traffic that is moving parallel with or against you (depending on which way you were going) at a stop lighted intersection. Other components include using cardinal and intermediate directions, navigating unfamiliar areas, using proper cane techniques, learning when to solicit assistance, and planning trips and routes. We commenced our lessons beginning in third grade, the previous years mostly being focused on biweekly field trips and having fun. That slowly tapered off as I and a few students familiarized ourselves with the layout of our neighbourhood, and then we went on several shopping expeditions.

At first, I was pretty good at crossing streets, especially when I later learnt to identify various traffic phases, but a few years later, my hearing decreased at an alarming rate, and my ear, nose, and throat specialist told my mother and I one morning in my sophomore year that there was nothing they could do to halt its progress, unless they came up with a cure. So, since I was never able to consistently identify when it was safe for me to cross streets independently after that, it was later decided that I would, much to my chagrin, need to rely on strangers to solicit assistance at every intersection that I came to by holding up a card, saying, I am deaf blind, and I need to cross street, and a method of attracting my attention, like tapping my shoulder if they could help. Of course, I knew that I could trust them to help me, as they would also have to put themselves at risk as well. On the same token, my teachers agreed that I should ask the transit bus driver to let me know when we have arrived at the bus stop that I needed to get off at, but I was uncomfortable with having to burden the driver with more than what they were obligated to do. So, by chance, I was found eligible to use the paratransit service, which is a shared ride programme that takes people from door to door within the transit district. One afternoon in Spring of 2013, when I asked one of the staff at the training centre to help me fill out the application, they wanted me to elicit an explanation as to why I couldn’t use the regular public transportation system on my own, so I had to tell them that because of my severe hearing loss, as well as my total blindness, they had made it unsafe for me to cross streets and railroad tracks. They said that they fully believed me; they just wanted to make sure that I wasn’t doing it out of pure laziness. And, while most people went out shopping for groceries, I decided to have them delivered. Meanwhile, I used a talking GPS that I connected to my hearing aids, so that I could discretely hear each stop. By then, I noticed that I felt a much greater sense of having blended in so well, since I would have no doubt stood out from the crowd had I implemented my teacher’s suggestion, and I didn’t want that. My mobility teacher saw this and knew that they needed to help me get my own talking GPS. So, they pitched to several grant organisations and provided a convincing story of how it would help me gain more independence.

Better do it Now than Never

In preparation for the potential possibility of moving out, I learnt various forms of independent living skills, such as personal hygiene, which also included things like grooming, nail care, and hair care, as well as colour-coding clothes, doing laundry, performing light and deep housekeeping, meal preparation, money management and budgeting, shopping, using public transportation, medication administration, and more. In the field of caregiving, these are also known by the abbreviation, ADL/IADL, which stands for activities of daily living/Instrumental Activities of Daily Living. Other people have referred to these activities as DLS, or daily living skills. Whatever they’re called, there is generally a consensus that blind people ought to be familiar with them as much as possible should they ever be thrown upon the world to shift for themselves unexpectedly.

But what happens if, one day, they have a massive traumatic experience that causes them to withdraw from society, leaving them feeling hopeless and despaired, barely having energy to get out of bed and living life to the fullest and, as a result, getting into more debt just to survive? What do they do? Do they just give up, or do they try and make best of the situation as they know how? What if there were a family member or friend who could be paid to take off some of that load for them, so that they can concentrate on their recovery and reintegrate back into the community? In Oregon, we are lucky to have such a programme, which is under the Oregon Health Authority’s Behavioural Health Team and Comagine Health. It is called the PC20 programme, and the caregivers who work for them are known as personal care attendants, or PCAs. But getting access to these services isn’t as easy as it sounds. It’s one thing to just say, I’d like to have this, but it is another thing to prove that you need it. It’s kind of like convincing someone why you need to pass your pet as an emotional support animal. Only in this case, my ESA happens to be a person/companion, but a person expects to get paid so that they can take care of themselves, and many blind people are reluctant to take up another’s time, which is why they opt to have a guide dog instead. And for that reason, I decided to do away with the blind community, as the vast majority of them don’t understand what it’s like to live the life I’m currently forced to live. They do not understand what it is like to have to deal with severe and persistent mental illness every day. They do not understand the struggles I have to hear things on a daily basis because I lost most of my hearing in both ears. They do not understand how bad gender dysphoria really is. But you know what, they should be grateful they got the life they want, and I would do anything to have it. So, I vowed to myself that I will never make friends in the blind community unless they truly knew how it felt to be me all the time. Just a few days ago I learnt that some blind people have been successfully able to get their doctor to write them a letter of justification to have their Medicaid plan cover the maximum number of Aira minutes.

I won’t go Speechless

Growing up, I have been teased and bullied for being so animated in my conversations, as, from what I later inferred, it was considered unmanly or effeminate to be so overly enthusiastic about every little thing. And to rub even more salt into the wound, some of the bullies were my own family members and relatives. One assistant even told me that I didn’t need to raise my hand because school was not in session, so you can imagine how I had flushed with mortification. But even before that, I was sometimes seen as the wallflower at major events because I hardly ever talked to anyone besides my closest friends. I also felt extremely uncomfortable applauding because I couldn’t tell what people were clapping about. The same thing went for laughter and cheering, and I almost never used expressions like oh man, good lord, etc. On an interesting note, DeafBlind people applaud by stomping their feet. Then, as I progressed through my education, I learnt how to take part in guiding my advisors into making an agreement as to what my goals would be for the following year on my individualized education plan (IEP). When I was little, someone usually spoke up for me whenever my teacher gave me an assignment that wasn’t accessible or would prove futile, such as having me learn handwriting when it most likely wasn’t going to be useful to me, unless it was to sign my own name on legal documents. But as I got older, I frequently got reminders to self-advocate and speak up for myself whenever I felt like my needs weren’t being met. They made it seem so simple, too. ‘Just tell the teacher what you want to have happen differently.’ But I knew that there was more going on. For example, I barely made it past my second algebra class because I didn’t resonate well with the teacher I had, and I didn’t know that I could’ve gotten one-on-one tutoring. It appears that there is a hidden stigma surrounding the act of asking for help. For example, just last year, I learnt about the rhino and the hedgehog, and how each of them would approach the situation differently. A rhino would charge at it and demand justice, while a hedgehog would shrink away and do everything possible to avoid conflict. Thus, I was afraid of hurting people’s feelings. For instance, when one of my teachers encouraged me to join the track and field team at school, my mind was screaming, never! but aloud, I simply went with the flow. Ultimately, it turned out to be an excellent experience. Still, I sometimes end up hurting their feelings for not telling them sooner in the first place, like when I decided to back out of going to a tournament a few months after having come back from my horrendous trip in 2016 when they had assumed that I was planning on going. Fortunately, I learnt from my choir director that it’s better to sing loudly and proudly, and that you should sing it strong, even if it was wrong.

But then, many years later, I discovered an inner power, and that was the ability to advocate for another. Me, who was afraid of telling people I had severe hearing loss, me, who was always seen as shy and meek, me, who had been deemed geeky and antisocial, me, who always took things too seriously and was easily offended, had this secret weapon. I could advocate for someone who couldn’t advocate for themselves. And guess who that person was? My brother!

Introducing HKNC

Shortly after graduating high school, I learnt of an organization called the Helen Keller National Centre, which was headquartered in Long Island, New York. Their services were specifically geared to meet the needs of people who were DeafBlind. That is, who could neither see nor hear at the same time. If a person lost their hearing before they acquired language, then they would most likely grow up in the Deaf world and learn how to adapt to the culture without sight. But if they lost their hearing later in life, along with their sight, or if they had already been blind, then they could relearn some of those skills without hearing, like knowing if the oil was hot enough to cook on without hearing the sizzling when you flicked water over it. While I was at one of their meetings, I learnt of one other aspect of DB culture. SSPs, or support service providers. These were folx who were kind of like caregivers, but they mostly focused on helping the DeafBlind person run errands, gain social inclusion, reading their mail, and more, and the best thing is that they would most likely be able to communicate with the DeafBlind individual in whatever manner that worked for them. Unfortunately, there were very few states that offered this programme, as it was most likely based on the number of DeafBlind people living there. Almost every state has services meant to address those who are deaf or blind, but not both. But I got to attend several legislative sessions in which we had been granted an audience to testify our need for these services, and I told them the same thing I had told my mother’s friends at a labour union meeting some years before. Since I had always felt like my mum had been giving my brother more attention than me, and I naturally felt envious of this, I needed someone to be my eyes and ears and give me the information that I was desperately lacking, such as telling me the make and models of some of my favourite products. My mum always assured me that I should never think of myself as being less of a priority than my brother, even though she knew that she most likely wouldn’t be able to change the situation for herself and her firstborn son. IN some of Mrs. McDaniel’s books, some oncology programmes she had written about had a mental health support group for siblings of a severely disabled or chronically-ill patient, because when they get all the attention, the siblings feel left out and abandoned. Yes, I have been jealous that some of my closest friends had everything made easy for them. They most likely had their fortune made, they grew popular, learnt to crack jokes, got invited to various events, and eventually find a lifelong partner. And where was I? Still stuck at home with only a few acquaintances. Similarly, I envied those who could go on various family trips and vacations, while I only looked forward to attending a few summer camps and retreats a few times a year. In fact, when my mother failed to get me to a tech camp that I had really wanted to go to, I was very sad and upset about the possibility that I would never get the chance to go, all because my mum didn’t like driving fifty miles to take me there. Fortunately, the school district agreed to take me there, though I’m not sure if my mother hired them to take me there and back. At any rate, I was glad that I got the chance to go before that school was shut down three years later.

Since I lacked a sibling whom I could talk to whenever I wanted, I substituted one of my relatives in filling that role until I later realised how toxic they have been to me many years ago. One of my friends who was seeing a therapist at the time told me that I was probably experiencing co-dependency. But one of my former teachers, who is still my friend, encouraged me to partake of an interdependent or mutual aid agreement. My mum was never able to take up any permanent job, nor was she able to take any college education classes, for my brother always commanded her attention almost round the clock. So, she was finally forced to resign herself to being his primary caregiver, and, along with my father’s alimony and child support payments, we were able to avoid deep privations and hardships.

Self-Care VS. Community Support

It’s no secret that self-care seems to have superseded community support, as it’s easy to put all your energy into healing yourself mentally and emotionally. But there are some things that just can’t be addressed by self-care alone without a whole lot of support from more than one person. When I came out as LGBTQIA+ in 2013, I searched for centres in my area that I could visit. In turn, The Q Centre referred me to visit SMYRC, which is a queer youth resource centre. And, thanks to them, I heard about a queer youth choir called Bridging Voices. So, for the next three years, those two organisations have become my safe haven while I worked on redefining some of my goals, like figuring out whether I wanted to go back to school, or if I wanted to save up money to move out, so that I could fully express myself in the way that I wanted. A third, slightly less involved organisation that I sometimes went to was Independent Living Resources, which sometimes hosted various social and recreational events.

But come 2016, and following my near fatal experience, I found that I have aged out of both organisations, who generally worked with youth between the ages of 12-23. So, I was at a loss as to where to go next. Nobody told me of additional places I could go to for further support on a daily basis. In 2017, however, when I initially decided to join a general LGBTQIA+ choir, they told me that a group of founding members were starting a trans-choir, which would be more appropriate for what I was in search of. But it wasn’t until two years later that I was able to fully take part in the rehearsals and concerts!

All of these things came to a sudden halt when we were forced to go virtual because of the pandemic, but after almost two years of doing nothing except working from home and only going out when my mother was able to find someone to stay at home with my brother, who had recently refused to put on any clothes and go out, my job performance started suffering immensely! I found it extremely difficult to regulate my sleep-wake cycle, despite having taken melatonin supplements, thereby making meeting certain commitments more difficult. To make matters worse, I was frequently yelled at for oversleeping when I was little, so I sometimes forced myself to stay awake so as not to risk oversleeping and thus not getting flashbacks or triggers of being yelled at. With help from my vocational employment programme, I was able to get my doctor to officially diagnose me with non-24, which can hopefully lead to getting a good melatonin receptor agonist or anti-anxiety medicine, as well as any supporting documentation I might need to request leniency or more caregiving hours for support with daily activities.

Caregiving has been around since the earliest form of civilisation, whether they did it for free or in exchange for other things, like money or bartering. IN the Victorian era, according from what I read in Mr. Horatio alger JR’s books, a poor boy who often knew the streets of a metropolis was considered a valuable asset by a rich gentleman, lady, or any other individual to guide them around town. Some elderly people hired what others might consider vagabonds and ragamuffins if they had a decent education and could read well and write a good hand. These folks often became their private secretary. Often times, these opportunities appeared at the brink of despair when a mean and selfish squire was on the verge of foreclosing a family farmhouse, and their squire’s family despised these opportunities and did what they could to discredit the employee based on their poverty, creed, and other things, including the ragged clothes they wore. But this was all when they had poorhouses or almshouses, which many people tended to avoid, as they used the principle of beggars couldn’t be choosers to make their lives as miserable as possible. We still have that to-day, but at least we have a better understanding of social welfare than we had back then. But crazy people were often sent to madhouses and asylums, which was far worse than if they could’ve gotten caregiving.

I never thought of consulting a mental health provider until one day, when I was desperately in search of a caregiver for my brother, I contacted a regional representative of HKNC, and my mother had told them that she sometimes acted as my support person, that they wondered if I was getting any services, since it seemed to them like I needed my mother, but at the same time I wanted to be independent. That’s when I explained both to them and my brother’s case manager about the SSP programme, and that it didn’t necessarily have to be my mum, per se. They had asked me how I had gotten the SSP when I went to an amusement park. My mother told them that I was extremely fond of going aboard various rides, but that she had to give up taking me because my brother hated going on them, which makes sense, since nobody could really explain to him why he was on that ride, or what it would do. It turned out that the SSPs I met there were volunteers from the university who were taking Deaf culture classes, and that such opportunities were rare here in Oregon. My brother’s case manager said, ‘Well, those are the kinds of services he has, since that’s obviously what your mum is doing for him, but since you’re not getting services, you don’t have that available. They don’t already have a case manager, right?’ That’s when my mother told them what my brother’s previous case manager had told her many years before, that I was just too smart to qualify for intellectual and developmental disability services, which was what my brother had been getting all along. Obviously, people in Seattle were spoiled just for being DeafBlind. But here, I had to fight just to get attention. Then the HKNC rep asked, ‘Your services are DD, not mental health?’ and the caseworker responded in the affirmative. They turned to face me and asked if I had ever thought of getting a caseworker through the mental health system, since it was clearly evident to them that I had anxiety, and that I could get it diagnosed through them and start receiving services. I went ahead and started the process, but when it came time for me to bring up the question, they told me, ‘Oh, you don’t need case management or caregiving because your diagnoses aren’t severe enough to require it.’ So, I gave up on it for the time being. But all of that came bobbing up from the surface again after three or four years had passed since my brother’s refusing to go out, and our chances of finding a caregiver for him grew more scarce, and I was experiencing an increasing level of house fever. I just couldn’t take it anymore! Desperate times had called for desperate measures. My mum, who had previously taken to hiring only Spanish-speaking caregivers so she could easily communicate with them, all of whom had quit because they were easily intimidated by his aggressive behaviours, ended up having to sacrifice herself to learning how to use Google Translate to communicate with English-speaking caregivers, who were more likely to be better problem solvers, since they generally had more resources made available to them. Obviously, this meant that most of the caregivers we hired in the past hadn’t gotten the training and certification needed to avoid or redirect those behaviours. They also didn’t know how to effectively communicate in a way that he could understand, especially when out in public, where he wouldn’t know where a bathroom was, or that he was hungry.

When I began reaching out to various Facebook groups, people often asked me, ‘Well, aren’t you guys getting support from Vocational Rehabilitation?’ And I’d have to tell them multiple times that A) my brother was deemed unemployable because he could not be engaged to take part in a single activity and had no reward and communication system that would be useful in the workplace, and B) I wanted support with things like volunteering and going out to places, but unfortunately Voc Rehab would only support you if you had a specific career goal in mind, and that they didn’t support hobbies.

I began calling every number I could think of and sometimes impersonated other people by disguising my voice, in case the person I spoke to turned out to be rude and condescending, as was often the case. My mother was even yelled at by a DHS worker when she had tried to apply for food stamps a long time ago. They told her that she had already been getting lots of benefits, and why did she want more? I wondered how that worker would’ve responded if they had known how drastically our situation would’ve changed. I know that people act rude and condescending these days because there are lots of dishonest people out there, trying to take advantage of the system. But if a person sounded desperate, then it’s an obvious sign that it is a cry for help, but no one is listening. My mother had recently confided this information to my brother’s current case manager, who assured her that the only people receiving benefits were my brother and myself. This was even more pronounced when a former caregiver called their attention to our house likely having hazardous materials like asbestos, but my mother just couldn’t afford to make those repairs.

Somehow, it felt easier to take on the blows and attacks if they were meant for someone else than if they were directed at me. Someone later described this perfectly as the way a mama bear would be ready to defend her young, but when the enemy corners her directly, she’d barely have the energy to defend herself. And since I knew I couldn’t help myself in that instant, I had to do something about it by helping others. Unfortunately, it does have its drawbacks, as I have been accused of overstepping and advocating too much, just like how my former teacher was treated when they were trying to get additional services through public funding. They told me that I was now learning firsthand what they went through. Still, for the sake of humanity, and as a fellow creature, I could not bear to see him suffer, regardless of whether or not he was going to wear any clothing. What if there were a fire and he had to be taken out? What if he had a severe medical emergency, or anything that his presence would cause him to be put in danger? Worst yet, what would happen to him if something were to happen to his mother, to whom he was so attached? Some people have called me an attention seeker and told me that I should try to focus on myself because there was only so much you could do. The problem is that there is no one right solution, but because of socioeconomic status, people might favour one view over another. Fortunately, a friend reassured me that I was completely in the right, and that, as a private citizen, constituant, and sibling, I had every right, perhaps even the obligation, to stand up for what he needs and wants if I felt like he wasn’t getting the things he deserved. Still, others have argued that it was just a way to have my mother all to myself, and that I should be more appreciative of the little amount of time that we do get to spend together because she has to take care of him full time, and that she’s also getting paid for it. I am, however, concerned that her full and undivided attention will put her own health at risk because of her likely having diabetes complications and varicose veins, plus not being able to take time off to see the doctor.
But that’s how I learnt about the three types of caregiving and direct supports here in Oregon:

• Ageing and People with Disabilities, which assists people with physical disabilities, not including blindness and hearing loss, which are considered sensory disabilities.
• Intellectual/Developmental Disabilities, which also includes the Children’s Incentive Programme.
• Addictions and Mental Health Programme, which helps people with behavioural health issues rebuild the skills they need to live on their own following trauma or other things.

The fourth one would be a comprehensive DeafBlind programme made up of intervener and SSP/Co-navigator services, which would be paid for by Medicaid or a grant by Bridges Oregon for short term intervention. Seattle’s DeafBlind Service Centre is doing this through the state’s Deaf and Hard-of-Hearing Services programme. So, when I began poking around, I had to constantly tell my story about why it was that I so desperately wanted and needed a caregiver. I threatened to file grievances, get a second opinion, and or bring witnesses to the table to vouch for me and corroborate my story. It’s not as if I would lie or anything. It wasn’t until someone later clarified this for me by saying that I only wanted a support person for social and recreational goals, and not so much with some of the other things that were generally associated with caregiving, like wiping butts or transferring someone using a Hoyer lift. But what if I could justify this need by saying that if I could fully express my gender in the way of dressing, putting on makeup, styling my hair, etc, then I would feel more socially included? Or that I felt more confident with things like swimming? In fact, most young people think that caregiving would be an easy job, until they end up having to be in very close proximity with the client, which can make them extremely uncomfortable. They’d mostly think that they and the client would just watch a film and be done with it. Since I knew that I would never qualify through I/DD, and because APD did not feel that I met their criteria, my primary care doctor agreed that the mental/behavioural health programme was the thing that I needed. But because of what happened at the previous community mental health provider, I decided to forego it and try another one that seemed to be more promising and offered more comprehensive services, especially towards the LGBTQIA+ community. Still, when I asked about those services like intensive outpatient programmes, secure residential facilities, etc, they said that it was primarily meant for folx who had

• severe schizophrenia,
• major depression,
• were at high risk of homicide or suicide, or
• who were completely addicted to drugs.

Many of those people were those who had recently gotten out of prison for pulling a knife on their family or things like that. They did admit that mental illnesses can have acute needs, meaning that symptoms can occur spontaneously in response to triggering events. They even mentioned lack of family and social supports and limited daily-living skills as needs they could address. But now that I think about it, I probably could have qualified for the physical disabilities programme if I could show that the severe mal de debarkment syndrome and vertigo I got in 2016 were enough to limit my ability to shower safely without falling or passing out.
One other thing that hadn’t been mentioned was that my previous provider had not diagnosed me with gender dysphoria, and neither has my doctor, since I decided that I would pursue hair removal and other things on my own. But when I later asked my doctor to write me a letter to have the gender marker changed on my passport, I knew that a diagnosis would be warranted for the first time. Plus, the place I was originally getting laser treatments had gone out of business, and I did not know if I could afford another expense. That pretty much sealed the deal for me, because one aspect of treating gender dysphoria is finding resources that will make you feel gender euphoric. So, having that diagnosis allowed me to quickly move through the mental health system until I became established with the company that contracts with the Oregon Health Authority for their caregiving programme, Comagine Health, and Northwest Habilitation Services. They also provide the 1915(I) Waiver programme to help with skills training, job coaching, and community exploration, since the PC20 programme is primarily designed to help people do certain tasks at home and provide actual caregiving services. Also, ever since my horrific ordeal in 2016, in which I rapidly gained lots of weight, I was not able to wear anything other than comfort clothes, and I want to try and change that, if I can.

One of the things I am hoping they can help me with is get gender-affirming clothes and hygiene products without any of my family or relatives finding out, for they are extremely Catholic and conservative. Still, if it’ll help me in securing me a favourable job offer because of how well I had presented myself at the interview, then I would think it was a good investment to begin with. I got the concept from a book about transgender teenagers living on the streets in LA. They had peer mentors known as drag parents, who already knew the rope of what looked affirming to their charges so they could easily pass. If I could only get someone, and perhaps even pay them for their time and trouble, then I wouldn’t have to worry about what others thought of me.

From Mental Illness to Mental Wellness

Sometime in 2018, one of my friends on Facebook said that they had gotten back from enjoying a nice outing in which they met a lot of wonderful people, but that they couldn’t go into specifics because of confidentiality. Fortunately for me, they mentioned the name of the organization, so I looked into it, but I quickly put it into the back of my mind for a later time, figuring that I’d have plenty of opportunities to remember it later. Sure enough, I was so bored one day that I decided to look at it again, nearly three years after I had heard of it. I just knew that I needed to tell my interim psychology consultant and get me a referral to join. This was further sparked by my recent obsession and need to learn all I could about working with commercial kitchen equipment, or other forms of working with professional gear, as well.

Introducing the Clubhouse Principle

Many, many years ago, around the late 1940’s, a group of soon-to-be discharged psychiatric patients got together and formed a club called WANA (we are not alone). When they were out of the psych ward, they decided to meet up at a place which they later called Fountain House. They quickly grew from six-seven members to ten, as they sought to hire staff to help them oversee the operations of the clubhouse. After a short while, this concept spread, slowly at first, but quickly gaining momentum as more people became aware of it. The Clubhouse International headquarters soon opened in New York, and other clubhouses started appearing in other countries besides the United States. Fortunately for Oregon, five clubhouses became available for members to join. I quickly made up my mind that 2022 would be the year in which I would make my resolution to make the most of the lost time I spent in putting my life on hold and learning the skills I wish I could’ve learnt when I was a child! It’s really difficult to reflect back on all the neat things I wish I could had learnt when I was in school, like yearbook editing, journalism, marketing, and more. But because so much attention was focused on setting aside some time for a study hall for my vision teachers to work with me, I never got the chance. That’s why, when people ask me why I’m not going to college, I tell them that I’m not ready to settle down yet until I learn all of those skills. I want to catch up on all of those adventures I wished I could have had, but was never to be. Someone said to me recently, ‘You really don’t want to miss out on anything, do you?’ I told them a little bit about my situation, and they finally saw where I was coming from.
Plus, the nice thing about joining the clubhouse is, when you are enrolled, you remain enrolled for life, unlike some of the other places that I’ve previously been to which have age limitations or other cutoffs. And, if you moved, you could have your referral sent over to the clubhouse in that area, as well!

What’s even nice is that the clubhouse is the mental/behavioural health equivalent of a day programme modelled after ARC, like Imagine Possibilities, which is specifically designed to meet the needs of youth and adults with intellectual/developmental disabilities. This is where my brother went to for a three-year transitional period shortly after graduating high school. Of course, nobody there knew sign language because there weren’t any D/deaf people, as far as anyone knew, so he never got the help he should’ve gotten to be able to fully develop himself to his utmost potential.

When I told my brother’s case manager about this wonderful resource, they said, ‘Oh, the clubhouse is not a programme, okay? It’s just a group of people coming together who struggle with mental health.’ I honestly felt insulted, because yes, it’s a peer support group, but it is so far more than that, because they offer employment, education, medical and psychiatric resources, and housing opportunities to aid in a member’s recovery. So, I do see it as a day programme because they have work-ordered days every single day of the week, and they have social and recreational activities on evenings and weekends. Yes, there are peer support groups that operate on a smaller scale, like NAMI or the Q Centre, but I really don’t like hierarchising disabilities, so no matter what it is, I’m extremely grateful that this programme exists for people like ourselves. Yes, a day programme and the clubhouse model, as well as a drop-in centre, all of those things are like the difference between a boat, a car, and an aeroplane. They all have some things in common, but they also have lots of differences as well in the way they each get from point A to point B. A day programme is primarily run by staff and have a rigid schedule. And while a clubhouse does have staff and have a schedule, it is primarily run by members themselves. And a drop-in centre is just a gathering that can offer more or less the same. That is why the clubhouse model is seen as the ultimate resource for full psychosocial rehabilitation.

Creating a New Narrative

Now, thanks to finally having access to these crucial resources that I feel are necessary to support my mental and emotional wellbeing, I feel like I am finally on the right path towards being able to tell my story in a new light! If I could only go back in time and find closure by telling those who had previously said no to me and show them how strongly I had fought to get what I wanted, then I would feel satisfied, and I could put my mind to rest. People tell me that I have an incredible memory, but I should’ve probably said that it was both a blessing and a curse, the latter because it makes me able to remembertraumatic events that I want to forget and not have to dwell upon.

My employer once asked me that they’d love to offer me a full-time job, and I said that as much as I would really like to, but with my current sleep and mental health issues, I didn’t feel like I had the capacity to fulfill such a commitment. So, when I learnt that NorthStar Clubhouse specifically focused on helping people get used to working full-time, I knew that this was most likely the best programme for me! And the best part of it is, unlike many of the other organisations I’ve been to, where things like kitchen prep and daily operations were overseen by staff, and activities were rarely held consecutively, the clubhouse structure has no hierarchy and everybody gets to do whatever they want to the best capacity that they’re able to.

I hope sometime in the near future, I will be able to wake up in the morning, get ready, eat breakfast, have my caregiver or medical transport take me to the clubhouse at 9:00, work there until 17:00, then having a few more hours to wind down with a social or recreational activity before getting ready for bed. My hope is that I will be able to do this every day, except Saturdays and Sundays. That is not to say that I won’t have anything to do on weekends, for I would like to take up more activities like

• skiing
• Snowboarding
• Snowshoeing
• riding a snowmobile or jet ski
• sailing
• flying
• and more.

One thing I always hated, ever since I began using paratransit, and especially after I compared it to riding an Uber or Lyft, was that the former not only had long wait times, which severely amped up my anxiety, but that they sometimes took a long time to get to your destination because they picked up or dropped off a lot of people along the way. Fortunately, in Oregon, your caregiver can be reimbursed for the mileage they use for taking you to various places. In other states, this is generally considered non-medical transportation.

I hope that all of these things will allow me to clear the cobwebs out of my head, lose some weight, and feel like I have something worth living for. With my public relations skills, I would love to help connect youth who are stuck in that process by assuring them that there are more resources than they realise, especially after they age out. I guess what made my situation different was that I didn’t exaggerate enough. One of my job coaches told me that in order to be taken seriously these days, you not only have to be direct and persistent, but that you might have to blow a few things out of proportion to make it seem like the problem was worse than it really was. And while I don’t want to say that my parents were wilfully negligent, I’m almost certain that I’ve been emotionally neglected because of having to compete with a sibling who was more severely disabled, so even though it wasn’t done on purpose, it was still passive and very harmful. In fact, when I later told one of my friends, who is the same one who had first gone to the clubhouse, about all of this, they kindly teased me about how determined a person I was, since I refused to back down from things. But I truly think that if you use it the right way, then it’ll result in a lot of good things in your favour.

My final advice is, if you’re experiencing the same issues I’ve had, know that there is help available, but you will have to know what you are looking for, otherwise you might end up with things that might not work, or that might work for a very brief period of time. For example, my therapist said that a lot of people ask them about group homes, but that is not an accurate term used in the mental health system, although it is a term used in the I/DD world and young people’s system. For your reference, the correct term is adult foster home. So, if I had known exactly the language to use when fighting for these things rather than using an umbrella term, then perhaps I would’ve probably gotten better results. People would’ve probably taken me more seriously if I had been living out on my own, since they all assumed I was getting family support. That’s why I had a lot of trouble applying for rental assistance despite my mum constantly yelling at me about it. But I’m finally glad to be on the path to getting my life back!

Hopefully these links here will help you in finding what you are looking for.