Tag: disability

Recovery

Posted on by Monique Barrett

What does recovery look like? I’m reminded of my appointment with a new doctor right after my psychiatric admission a couple of years back. He didn’t know what schizoaffective disorder was, which is fine, but it has “schizo” in it, which I think is recognisable enough for a rough idea. He said that I’ve recovered because I was no longer in hospital. I was offended, because surely it’s known that mental illnesses don’t work like that. I wished he’d actually listened to me explaining how it is a long term or life long illness. Just because I’ve recovered enough to get out of hospital does not mean I am “cured.”

I never saw that GP again. I needed understanding so that he could help me by crafting an accurate and compassionate mental health plan. That was not the mental health plan he gave me. Sadly you can’t expect understanding and compassion from everyone. People will tell you that your suffering is wrong and inappropriate and like that GP, they’ll muddy your path in the guise of helping. Recovering does not mean recovered! From the outside it looks like I’m in a good place, which is true, especially in comparison to other times in my life, but it should not be confused with a good place that functions independently without support. If you take away the support that keeps you okay because you seem to be doing well, you are no longer okay in result.

One goal of being recovered out of many is not to get rid of your supports, but to function alongside them, rather than because of them. Sometimes you can never be truly “recovered” in ableist terms and there’s no shame in that. The goal or expectation of being “recovered” can be extremely harmful, because for some, that will never be a reality. I like the term “recovering” better, because a lot of people are always in a state of change and movement, and there often is never a full stop to the end of our sentence.

“Recovering” doesn’t have to mean the possibility of a fully recovered state, it can just mean the faith in working with what you got. For some people, the best hope there is is to just to be alive and using the term “recovering” can be harmful as well. It could seem like it’s calling no change or movement a failure. People can be recovered, recovering or being and those three things are beautiful and a constant success. We do not need to compare ourselves to what ableist society calls success. We get to create our own reality and what it means in the context of our lives. A win for you may not be a win for someone else, but that does not invalidate it in the slightest. Look at yourself with the lens of compassion, because we all deserve that.

Sometimes my mind judges me and my “productivity,” because I think if someone saw into my life, they would think I’m a lazy bum who is getting away with cheating the system. When people ask me “what have you been up to?” I get instantly painted in shame, because my life does not mirror what society expects for adults. I feel like I’m bad because I can’t work and some days I achieve nothing because all of my little amount of energy goes to just being okay. My medication has made me put on a lot of weight, so because of lack of motivation and energy I don’t exercise, which just contributes to more weight gain. As a person who had an eating disorder since I was 12, I feel such disgust and shame when I look at my body. But my mental health is more important than being skinny.

I tell people that I find it hard to get out of the house more than twice a week, and some say things like “aim for 5 days,” as if that’s a reasonable goal. Goals should include steps, not impossible leaps. I feel like I’m expected to suddenly do things I can’t do, just because I’ve seemingly recovered. If you have a mental illness or disability, you have to change your viewpoint on what your successes are. There’s no one size fits all when it comes to your wins in life – we don’t come from cookie cutters.

I promise you, when you look at your life with compassion and ignore what society expects, you see that you are succeeding a lot more than you realise. “Productivity” does not make a life valuable. The idea of productivity isn’t needed to be a human worthy of love and respect. Judgement harms, especially if it is coming from within. It’s so helpful when you are compassionate towards yourself and your recovery, even if no one else is. If you have experienced darkness, every source of light, no matter how small, is evidence of success.

Recovery isn’t a straight line. I’ve recently had some really bad lows, but that does not mean I’ve gone backwards. Falling is a part of every route you take, so it’s important to know that you are enough, you are worthy of love and you are good.

Thank you for reading.

Goals and Limitations

Posted on by Monique Barrett

I’m always so tired. From when I wake up to when I go to bed, I am tired. Due to this exhaustion, it feels like I can never achieve what others can achieve in a day, so I’m hardly ever productive and I beat myself up for it. But I must remember that we all have unique limitations. My limitation is constant tiredness and a productive person’s limitation could be stress or a need to rest that they always ignore. We all need to work with what we got, because our successes are always different to others’. We also need to acknowledge that people often present only their best selves and therefore hide their true life or limitations to the public, especially on social media.

We need to accept ourselves and alter what we perceive as successful or productive. We have to change our goals to be more realistic and not judge ourselves for that. Because my disabilities mean I stay home a lot, I’ve made a change to my unrealistic to-do list. My main goal at the moment is to develop a routine in my life – wake up earlier, make the bed, eat three meals a day and go to bed earlier too. A good idea is to implement our reasonable goals in stages. When making a change in your life as a person with limitations, things are a lot harder than it seems to others. Celebrate your successes and progress, no matter how small they are. Break down the real value of each achievement without judgement or comparing to others.

A goal of mine is to go out at least once a week. That might seem ridiculously small to people with a job or those who love or need to go outside, but it’s a big deal to me due to a mix of conditions I have. For one, it drains my energy twice as much than when I’m at home. These little victories can have great benefits for your mental and physical health, and our relationships with people and the world. When I wake up early (for me) I will have more time in the day to be my kind of productive. When I read every night it will inspire me to be creative and allow me to use my brain. If I eat three meals a day (even if it is microwavable, if you can’t cook like me) I will have more energy and it will stop me from snacking. If I do some kind of art often, then it will really help with my mental health, skill improvement and journey to become a professional artist. Introduce new goals at a slow pace, because that way you will be less likely to become overwhelmed if you expect yourself to do too many things at once. Once again, don’t judge your own capabilities and your speed towards all of your goals. You are successful as you are.

What I did to work out what to do was writing in my journal all of my short term goals. Then I highlighted the goals that are reasonable to introduce now or soon. Bonus points if they are beneficial to you or others. Write down all the highlighted goals again, then repeat the highlighting and making a new list process until you have one to three reasonable goals. The hope is to not completely give up, but to also remember that it’s okay to not perfectly do everything and have a break. And celebrate starting a goal and being in the process of making it a part of your routine (if it is reoccurring) or completing it (if it’s a one off goal). And only when you are ready to add a new goal, look at your reasonable goals list again and start one to three new ones, depending on how big they are.

Be kind to yourself! Having limitations, whatever they may be, is completely normal and fully okay. Most if not all people who seem successful struggle too. Your life is yours, so comparing yourself to others is not helpful. We are all successes, just our own success is unique.

Here’s to reasonable goals!

Women with Autism

Posted on by Monique Barrett

Most of my life I grew up not fully understanding myself and my autism. When I looked up the characteristics or symptoms, heard people talking about it or saw it represented in movies or on TV, I was confused because it did not quite fit me. It was like my hand was supposed to fit in a glove, but it was either too tight or too loose in each finger. There were some parts that did fit, so I continued to wear this glove, pretending that the rest fit as well.

I was diagnosed with aspergers or autism (and ADHD) when I was 5. I do not know if anyone properly explained to me about what ASD (autistic spectrum disorder) is, and if they did, I was too young to remember. When I grew up, I did not have a good understanding of it at all and I had a strong belief that it made me “bad.” I was ashamed of myself and how I treated people, even though I could not help the way I was and am.

It’s only in the last few years that I embraced my condition and accepted it. Before, I would keep it as a secret and tried my best to be “normal.” People wouldn’t know that I had autism, or at least I was convinced of that. I remember crying while confiding in certain people, feeling like I had to if I had a breakdown or tantrum in front of them. Those few people I told were extremely understanding and supportive, without a trace of judgement. That confused me, because did they not know that it made me bad? Did they not know how shameful it is?

The last two years I have completely owned my autism. It was no longer a secret and I would publicly talk about it, especially online, which felt so liberating. The thing is, even though I was no longer ashamed, I still was confused. Why doesn’t the glove quite fit? I can’t have autism because I can do this or that, right?

On the 6th of September of 2019 my partner and I went to a workshop that focused on women with ASD and I am truly so glad that we went. Even though the workshop was mainly for carers, teachers and parents, I found that it also really helped me to understand myself better too. It all suddenly made sense. The characteristics that women with autism have are different than men with autism, and because it is a lot more common for boys to have ASD, most media represented the characteristics that they have. I wrote as much and as fast as I could in the little book in my handbag, with all of the validating information I learnt. Here is some of it that I can actually understand from my scribbles.

Apparently women and girls with ASD are often artistic, which was a huge thing for me, because I had the idea that people with autism are mainly logic and maths focused. Not always the case! Another big thing that felt very true for me was that women often are able to analyse and become mirrors. The reason why girls are often not represented as people with ASD is because they are very good at pretending to be normal, by copying others. Girls are better with social skills, communication and imagination than some boys, so their autism can go often unseen and they are harder to diagnose.

We often like things to be even and colour can often affect mood and concentration. I remember this clearly from when I was in primary school, because classrooms were often very colour coded. I remember thinking at length why certain magazine files that were labelled for the different kinds of books, homework and more were coloured the way they were. I remember disagreeing with certain colour choices too. And as for liking things to be even, I never really thought that was a symptom, because doesn’t everyone like that?

Another thing is that for girls with autism, rules make sense to us so we often never break a rule. We try hard at school and are seen as a “good girl,” particularly in primary school. We are often passive and can’t be assertive and are unable to say “no” to friends and others. A lot of that rings very true for me and are things that I thought were examples of “not autistic behaviour.” I thought that they were examples of me pretending that I was normal! I always thought that often autistic children were very naughty at school, but in primary school, especially, I was always very well behaved. It was when I got home that my tantrums and breakdowns often came out. This was just the start of the workshop and already I was feeling so validated.

Girls with autism or ASD often withdraw or shutdown rather than be angry. We are unable to “read” other people’s minds and so we ask questions to be in control. We are visual thinkers, which is like we are watching a DVD in our head. Also, we tend to have increased anxiety, so we need to prepare before social events as to be socially successful. We are great “actors,” and we practice and learn social phrases. This is called mirroring or “social echolalia.” This leads to mental and physical exhaustion and therefore less desire to interact and an increase in anxiety.

We create personas based on people we perceive as successful. I remember watching this youtuber who played video games, for hours on end, learning how to talk like her and practising phrases she said in the mirror, because I thought she sounded cool and I wanted to be like her. I struggled with talking in my earlier years, but once I started medication and working hard at home in kindergarten, I excelled. I was really good at public speaking, debating and acting. People saw that and thought I was very socially competent, but what people don’t see is all the work I put in to be social.

We then went to what to do with these women and girls as teachers and carers. The lady taking the workshop said that we should build flexibility into rules, make clear specific rules BEFORE an event, state behaviour you want rather than you don’t want, give explanations, give clear boundaries and discuss what to do when rules are broken. I think these are excellent things to do with women like me. It really helps me to clearly understand the entire details of an event and what to do, including if things go wrong. Otherwise I can get extremely overwhelmed, upset and anxious. It really does help me to understand, because without explanations, everything become chaos.

Females on the spectrum can actually over-empathise. We don’t know what to do in situations that involve empathy, because we’re not NOT caring, we just don’t know what to do. I find I often get instantly overwhelmed when someone shares something they are going through with me, because I don’t know how to communicate or express how much I care for them and wish they were not feeling such pain. I suddenly feel inadequate in my communication skills and I overthink, thinking that I am bad and selfish for not replying in the “right” way.

Lots of girls come home from school and have meltdowns, or we rest or sleep. We recharge by being alone, or in a fantasy world. We have obsessive interests and I outlined those two words many times in my little book. God, I have obsessive interests. And it always seems to be in a cycle – I often get very invested in video games, art, video making, comics, TV, drag, writing, etc. for hours on end for days or weeks and then suddenly I move on. Then in the future, the obsessive interest comes back.

We often start a lot of projects and stop. I do this all the time and I hate it! It makes me feel like I never finish anything. Also we can have friends, but not know a lot about them or want to see them outside of school. I have some lovely friends but I hate how I just can’t seem to keep in contact with them or see them in real life. I think it’s been a year or more for a few of them. I find it very hard to keep hold of friendships. We can be aware that we are different and therefore we can be self-conscious because of this. We often have a lack of emotional talk and so we don’t open up. It’s only been recently that I have pushed myself to open up to friends, because all of my primary school and high school friendships were very one-dimensional. I felt like we didn’t really know each other at all.

We withdraw due to perceived or real lack of success in friendships, so we just give up. I am guilty of this many times, because we view things that are not “mistakes” as mistakes. We do not like to be seen as different, we can take things personally and we can take on other people’s emotions. We “marinate,” which is sitting with something and letting it process. An example is getting results from a test, being happy and then after a while thinking, “I’m bad at maths because I got 1% wrong.”

As I said before, women with ASD can have a lot of anxiety. We are uncertain about future events, so we worry about negative outcomes. We live on high alert and so things feel out of our control. We are perfectionists with high expectations and we have more anxiety triggers. We want a sense of control and for things to be predictable. We wake up with higher levels of anxiety, but we find it difficult to recognise and label anxious feelings. Lots of things that add up are not recognised, so we look for the main event when there are actually many little ones.

Women with ASD are often misdiagnosed with things like BPD or bipolar. Like I said before, autism is portrayed in a very certain way in media, which can be good for boys, but not for girls. I am so glad I went to this workshop, because now I understand myself so much better and I feel validated in my condition. Some of these things I thought were examples of me not having autism were actually traits that proved that I did have it! I hope women or AFAB people feel validated as well from reading this. It feels so good to feel proud of myself not despite, but because of who I am and my autism. I would not be me without it, so I am grateful. Thank you so much for reading and I hope you found some understanding of yourself or others as well. Understanding our condition or ourselves is a life-long journey and is always growing and changing, so validation is important and I hope we continue to find it.

I am autistic and proud!

Disability and Art

Posted on by Monique Barrett

To me, disability and art goes hand in hand. When I struggled to communicate what I needed or wanted as a young child, I would draw pictures of it and then show my mum. When I felt isolated or misunderstood at school, I would walk around the playground, daydreaming about the different artworks and stories I could create. I had trouble understanding faces and emotions, so I drew them over and over to understand them better. I would go to the library and draw with my peers as a way of relating to them in ways I couldn’t with speech. I use my voice through art and I always have, because for me, art is about communication, from vague to complex ideas, for others and for myself.

Art has taught me things that I used to find hard to grasp and it bridged that gap between myself and others. My autism has informed my art in ways that I hope other neuro-divergent people would also understand. I used to be ashamed of my condition and how I believed it limited me, but now I’m proud of the unique insight of the world, its living inhabitants and complex topics that it has given me. Art has helped me to tackle the problems and trauma in my life that I hope makes others feel understood and validated too.

About a year and a half ago I went through my first psychosis episode that hospitalised me for nearly two months. A while later I was diagnosed with schizo-affective disorder which is a combination of schizophrenia and a mood disorder. It completely changed my life and this new disability has brought so many new trials. But art, like always, has helped me. During those days in the psychiatric ward, I would spend my time painting and therefore processing my reality and emotions. At that time I found it hard to communicate what was happening for me, even to myself, so I would dump my thoughts, hallucinations, fears, questions and feelings onto a canvas. Just like when I was a kid, art helped me connect to others and myself in ways I couldn’t without it.

Art has the power to let us process emotions and become more brave with each stroke, which can be difficult to accomplish with those unable to voice their truth in other ways. Everyone who picks up a paint brush or a pencil or anything else to make a mark is a leader. It means having the courage to convey your being to others, communicating feelings and thoughts that can change the world and the way people think and act. People with disabilities often are incredibly insightful and wise and so their art is vital in our society that goes against emotional intelligence. We are needed.