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flying-elliska · 5 years

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S5 Review pt.1 : the Good

Arthur season is over, time to analyze it as a finished story ! This meta in 3 parts will go over the good, the bad and the mindboggling. My general impression of the season : excellent beginning, very meh middle, interesting ending. In short : flawed but I feel people calling it a total disaster really are not making any effort to see it objectively. So ; let's dig into the why and how.

What I liked about this season :

A story made with and for Deaf people : It’s pretty evident when watching the interviews that Winona and Lucas really really enjoyed making the season and that it offered them an unprecedented level of representation. The creators obviously did their research, working with the people of the IVT. Personally I feel like I learned so much and the clips showing aspects of Deaf culture were among my favorites. It felt like a nuanced, rich, in-depth perspective, with details like choosing to get a cochlear implant or not, the testimony evening, the sign language class, Noee’s sign dance, the different ways to enjoy music, how to speak to someone who is Deaf, etc...showing that not everyone within that community has the same story or opinion, that they’re just people with their unique challenges but shared needs, as well as the really awesome culture that is part of being Deaf. It felt really respectful and a thousand miles away from the usual miserabilistic clichés - it brought up some concern about how difficult it is to be rejected/invisible in today’s society, but it was balanced with emotions like curiosity, admiration, and awe. I came to SKAM for the representation but I absolutely love getting educated about groups I’m not part of and I feel this is truly where the season shines. Learning from Deaf fans was also hella interesting.

A complex discussion about disability : A central plot point, and one of my favorites, was Arthur learning to overcome his (now internalized) ableism. We see that Arthur is an overachiever and this change in his life upsets this idea of the perfect life he has in mind. He repeadedly lashes out at the other Deaf people he meets, makes fun of sign language, underlines how he is ‘not like them’ at the beginning because he is still clinging to his own self image. We can understand where this comes from when we see how condescending towards any sort of weakness, and focused on performance over empathy his father is. But as he learns to meet actual Deaf people and see the diversity and beauty of the community, he learns there is no shame in that sort of difference and learns to stand up for himself and that was amazing to see. Another important part was Laura and Melchior’s inclusion and beyond being very funny, they highlighted the idea that although disabled people have different, sometimes competing needs, they also have things in common, and that deep wish of not being discounted/othered/excluded. All the disabled characters this season were complex, real people, not there just to teach others a lesson or inspire them or be pitied or the butt of a joke, and that is so sadly rare nowadays. Even though some bits did feel a bit like a PSA, I feel like overall it was very well done.

The politics of desirability : A theme running through the season is the idea that who we are attracted to is socially constructed and can really be biased by our prejudices. Alexia expressed this idea (albeit clumsily) in the bar scene early on, and this came back when she talked about her insecurities. This was also present in Laura’s insistence that disabled people have certain needs like everybody else. And finally, it’s present in Arthur’s own struggles - his fear of not being able to sleep with his girlfriend with his hearing aids, and his own difficulties in seeing what is happening with Noee and him saying ‘she’s deaf’ to the question ‘is she beautiful’ even as he is obviously into her. Our society gives us this incredibly narrow set of criteria for who is considered attractive - thin, white, able bodied, etc - but people’s actual real patterns of attraction and finding beauty are, when you set those prejudices aside, and see the beauty of people for who they are and not how well they fit a box, so much more broad and generous and diverse and I loved how this season highlighted that.

Technical excellence : God, the cinematography this season was absolutely off the charts, it makes me wish they could redo previous seasons with this amount of style. Shots like Arthur under the shower, or that party at the Asso with the blurry dancing, the shots in the pool, or the ones from the farm episode...INCREDIBLE. The sound editing was used sooooo well to put us in Arthur’s shoes, it was a wonder and I really felt how intense the change must have been for him because of that. And the acting is impeccable. You can really feel how well these actors know their characters by now, they have total mastery of their portrayal. Robin did an awesome job with tough scenes, but just...everyone was on their best game really.

A nuanced portrayal of abuse : Arthur’s relationship with his father was thouroughly heartbreaking, and it felt very real. I am very grateful that they didn’t try to redeem him - it’s important to show that even if you are trying your best, some people are toxic abusers and the best thing you can do is take your distance. I felt it right away, in the subtle way he was dismissing and belittling his wife and son, in the ways he was asserting his control over them, and I wasn’t surprised at all when more came out. It surprised me in the beginning that so many people were arguing that the father was caring, just strict - I feel like the signs were so obvious but I guess that’s the point. Abuse is a pattern that becomes visible over time and abusers can be perfectly charming and reasonable to people who don’t know what it’s like. Growing up with that is isolating and terrifying and it does awful things to your self esteem and your capacity to be in tune with your feelings. We can see that when Arthur basically defends his father’s actions because he is still so eager to have his love and placate him. Arthur’s behavior did not come from nowhere and it was inspiring to see him grow past that and realize he did not have to perpetuate the pattern and make his own choices. Also, his relationship with his mom was very sweet, supportive (her smoking weed with him was awesome) but complex - the way he was mean to her sometimes, condescending bc of her lack of studies ; the way she blamed herself for not seeing sooner - she must have been subjected to Patrick’s more emotional abuse, and so she will probably feel like she should have reacted sooner or known and that’s like...painful ugh. This whole thing was so raw and real. And it was incredibly important to see the nurse and her Jerome - adults, with medical knowledge - see Arthur’s situation and tell him that sometimes you just have to leave.

Highs and lows of friendship : Basile !!!! I was not a fan in s3 but the great aspect of POV shift is allowing us to see some characters through a different angle - even though I think Basile went through a lot of growth too. In Lucas’s season he was meant to be the annoying gross overly straight guy as a contrast - but for Arthur he is this devoted friend that is so open and sincere in his affection that his awkwardness comes off as endearing instead. You really understand why those two are friends : Arthur is smart, sarcastic, he can help Basile with social awareness and hype him up, but he’s also so painfully guarded and finds it hard to express emotion, I think, and it makes sense he loves Basile’s spontaneity and big heart. Meeting his grandfather was also so funny and endearing, as were all the marks of more physical affection he wasn’t afraid to show Arthur. I think having a friend like that is part of what allows Arthur to finally stand up on his own - whether against his father or deciding he needs to be single to figure himself out. As for the Gang in general, I loved the moments where they were all happy together (the early graffiti clip is truly one of the shining moments of the season for me) but their later spat is also quite understandable to me. I find it very realistic that although they are trying their best to accomodate their new friend’s disability, they’re going to mess up, that’s part of the process. The most important thing, I think, when faced with someone who is different from you, is to engage with it (respectfully) - ask questions, not assume. And communicate ffs. I also really liked those moments where the Crew and Gang came together, it gave this big end of high school vibe where all the squads merge and there is this feeling of having gone through an ordeal together that makes everyone closer. There were also so many funny moments that were absolute gold (the wheelbarrow ! the dinosaur balloons ! Imane getting attacked by chickens ! Emma and her horse! ).

Arthur on his own : I liked the more introspective moments we got this season. The successive alarms while he was angsting about his hearing coming back were such a clever way to put us in his perspective - there is already a lot of stress linked to a morning alarm, isn’t there ? We all know that moment in the morning where we don’t want to get out of bed and face the world, and taking that emotion and adding Arthur’s absolute stress at realizing that this change is lasting, it was really effective. Arthur’s link to water, as a symbol of another world where sound is much more diffuse, is quite interesting too. And the moment in last episode where he puts his glasses back on, too, as a more obvious sign of a disability that is very socially accepted and that is just part of who he is, just as his hearing loss is. We also got a moment with the bench of loneliness that was an interesting parallel with s3. (I love how the Buttes-Chaumont parc has become this double symbol in Skam France of both loneliness/alienation/putting on a mask and growth/return to authenticity.) And I like that he ended up the season single and deciding to figure himself out. It’s a big aspect of his character that he has spent too much time trying to conform to expectations and that he was super walled off as a result, that he hurt others without realizing, that he found himself boring, that he didn’t seem to open up to his friends, etc...and in the end he is a lot more open but he also knows there is a part of growth that being in a relationship cannot bring him. He can’t use women the way his father did. I respect that a lot, honestly, it’s what saved the end of the season for me, that they didn’t end up putting one girl above the other and made it about Arthur being lost and needing to find his way on his own.

The tornado and the sunshine : The new characters were awesome. Her role in the plot set aside, I really liked Noée as a character concept. I think Winona was awesome, and I liked Noée’s mix of warmth and feistiness. I like that they let her be angry at the way the world treated her, and compassionate at the same time. Also her headbutting that guy in the club that didn’t want to listen to her was !!! iconic. I loved her style, too, and that dance was so beautiful. Camille was a great addition to the team too, Arthur was lucky to find someone that patient and his dry humor but sunny disposition were great too. It was cute to see him with Mika as a couple of gurus - that we did get a Deaf/hearing couple was a good addition to the season, I think - and I hope we’ll see both of those new characters next season, too.

Queen Alexia : She was definitely one of the characters I had the most emotions for this season. She’s just so cool and her perspective on life is just so mature and interesting, her acceptance of herself and others so inspiring - a lot of the early clips with her were adorable. I loved how supportive she was in such a creative, playful way - that game she made for Arthur, the boards she brought, etc. The moments she talked about her insecurities, if bittersweet because of what happened later, remains one of my faves from the season. She was so beautiful framed by rainbows (also apparently that’s her sign name ? Amazing.) And the moment where she sings was just...oof. She was really brave and strong to be able to do that, to express her emotions and hurt in such a public, dignified and creative way. It was a moment of reckoning for Arthur, putting him on the spot and recognizing how much he hurt her, but it was done in such a graceful way - the way she signed to signal her acceptance of his Deafness, the reminder that she loves him and won’t be able to forget that immediately, and a rejoinder to recognize his feelings towards Noee, etc. She wasn’t perfect (organizing that meeting without asking really pushed it a bit too far - you can’t rush someone else’s self acceptance) but she was just ...really good.

Elu as an established couple : One of my biggest reproaches to s3 is that they didn’t give us enough fluff after all the drama (time constraints, I know, etc.) But this season they really delivered. And listen I know some fans love to blather about fanservice but fuck it, I just love seeing a healthy domestic queer couple on screen !!!! It’s just so bloody healing, because they feel real and in love like nothing I have ever seen on screen before. Maybe because so often straight actors are so awkward at playing queer intimacy and they’re really not. Seeing them in their new appartment was like a pure shot of serotonin - morning croissants ! fairylights everywhere ! but I also liked that it wasn’t too fluffy one note. We can still see that Eliott struggles with MI, that Lucas has some insecurities, but yet their devotion to each other is still as strong, as in “he’s my boyfriend and I love him.” It was a hopeful note throughout the season, Lucas being persistent and devoted all through the challenges of being with someone who is mentally ill. Also, I really liked Eliott’s role this season, as a sort of...provider for the Gang ? Getting them a van, bringing them to the cool graffiti place, making this fresque for them...you can feel he’s not 100% part of the gang because he’s older, already in college, etc, but at the same time he has sort of an observer role that can give them things no one else can. I feel like Lucas confided in him about the troubles they were going through and Eliott can empathize with being treated different, the fear of losing your friends...so Eliott helped them in his unique way, through art. And him having this new secret place he can bring more people to, and so full of color and sharing his art with people and !!!! God I’m emo he’s just my fave character ever really.

The pressure of the future : Listen the last year of high school in France is horrible, there is the pressure from the BAC + half the people are passing entrance exams and doing interviews for the stuff you want to do later and it’s so stressful and I’m glad they touched on that at least a little. Emma really embodied this theme this season, of the pressure of not wanting to know what you want to do later. It’s really when you realize that they’re all so young and being asked to make such big decisions for their entire lives is really sort of fucked up, and I think her being there is a way to dedramatize not knowing, and gives Arthur the freedom to see he doesn’t want to be a doctor ; I liked the apt comparison with Imane’s passion for medecine. I wish we’d seen more of Arthur figuring out his real passion (did he make that painting or what ?) but I appreciated this storyline.

Overall, I think this season was full of excellent moments - either funny, heartwarming, heartbreaking, or edifying - and it provided some much needed quality representation for the Deaf community. In that, and having educated a lot of people, it is at least somewhat a success. However, as a whole, it did not quite come together for me, which is what I will analyze in my next post.

#skam france #skamfr s5 #skam france meta #my meta #arthur broussard

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disjusticegrlpwr-blog · 6 years

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RR #5

Invisible No More tells the stories of women and GNC people of color who have been erased from conversations about state violence and gender violence. This book is both an analytical and historical tool for activists and a source of expression of personal and community trauma for the author.

Women and trans people of color have always been at the forefront of gender equity, anti-violence, and civil rights movements; however, these leaders frequently do not get the recogniion they deserve. The unique issues facing multiply marginalized people have not been adequately addressed by either feminist or civil rights communities. The Black Lives Matter movement has tried to reverse this trend; as founder Alicia Garza says “Black Lives Matter affirms the lves of Black queer and trans folks, disabled folks, Black-undocumented folks, folks with records, women and all Black lives along the gender spectrum. It centers those that have been marginalied within Black liberation movements” (p.2). However, larger conversations about police violence still too often leave these lives out.

With this conversation, Ritchie hopes to bring to light the issues, history, and impact of multiply marginalized women and GNC people of color. She writes “Invisible No More seeks to undo this erasure; to deepend, broaden, and provde context to the discussion of Black women’s experiences of policing and criminalization; to expand the frame to bring the experiences of Indigenous, Latinx, Asian, and AMEMSA women into view; and to illuminate the historic and present-day role of policing of gender and sexuality in the criminalization of communities of color” (p.11).

Ritchie also hopes to demonstrate to readers that women of color play the role not just of victims but also as community leaders in this movement. Women of color, especially Black trans women, have always been the backbone of civil rights movement as organizers, ledaers, supporters, and barers of trauma. Ritchie writes “this book is ultimately a celebration of the roles that Indigenous women, Black women, and women of color have plaayed in movements to resist racial profiling and police violence against communities of color, and in challenging antiviolence movements’ investment in criminal legal systems to demand safety on our terms” (p.17).

Ritchie was inspired to write this book after hearing the many stories of women of color subject to sexual and physical violence at the hands of police and recogniing that these stories were not getting the attention they deserved. She writes, “In thte end, it was the stories of the women who came forward...that drove what has become a lifelong journey” (p. 8).

Ritchie wrote this as much for herself as for others, writing that she used this as well as a learning experience of her own. No single black woman can speak for all women of color; Ritchie recognizes that she is still learning and that this book cannnot be judged as a comprehensive guide to intersectional anti-violence advocacy. Ritchie writes “My intention in writing this book is to amplify the experiences, voices, work, and perspectives of Indigenous women, Black women, and women of color, not to take the place of or to supplant the voices of my darker-skinned sisters, my trans and gender-nonconforming siblings, the Indigenous peoples whose land I am complicit in settling or immigrants” (p. 5).

Ritchie’s work stands out from other scholarly works about gender and state violence because of its heart; this work means to be a source of healing for the women and GNC oeoioke reading it. Ritchie writes “I write as an act of love, of mourning, of honoring, of commemoration, of liberation” (p.5)

I found the entirety of the book refreshing, informative, and powerful, but if I must pick a favorite it would be chapter 4, which focuses on disability. The mere existence of this chapter caused my heart to soar, as disability is almost always left out of conversations about social issues. Even writers who preach intersectionality leave out disability, focusing solely on gender and race. To non-disabled activists, disability is often not seen as a valid identity or something considered part of diversity. I recall a moment at my old school when the school president pledged to meet with all identity and social justice groups; when we questioned why he did not reach out to the disabled student group, he responded by saying that didn’t count as part of diversity or identity. At a school that prides itself on being “woke,” disability was still erased.

This chapter focuses on how disability, especially psychiatric disability, interact with each other regarding state violence. In the cases discussed in this chapter, the violence against the women can neither be attributed to just racism or ableism, but a specific form of anti-black racism not experience by white PWD or nondisabled POC. This relies on our history of scientific racism and its remnants that still define black women as “imbeciles” and “insane”, two words dripping with ableism.

I learned a lot from this chapter that I feel I should have known. As an advocate for the de-institutionalization movement, I realize I have failed by not viewing institutionalization as a form of just ableist oppression, rather than also a means of racial oppression such as in the case of Insane asylums for Indians. In the future, I will make sure I fully confront my own blind spots as a white disabled person and make more space for the voices of disabled women of color.

50% of people killed by police have a disability, and estimates say that disabled people comprise up to 80% of the incarcerated population. However, police violence is not often discussed in the disability community. I believe this is largely due to racism that many white disabled people still fall victim to; unfortunately, in my experience, disabled people think they are exempt from white privilege, leading to the further erasure and silencing of disabled voices of color. Though disabled people of color are (and always have been) incredibly influential leaders in our community, they still do not get the recognition and visibility they deserve. This chapter helped me recognize my own white privilege within the disabilty community and how the experience of disability is fundamentally different for people of color.

Works Cited

Ritchie, A. (2017). Invisible no more: Police violence against black women and women of color. Boston: Beacon Press.

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neon-mooni · 7 years

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simnovels replied to your photoset: star-sailorr: a comic about autism

It’s sad to see how in other environments than mine this actually happens. I don’t know if it’s because I live in the Netherlands or in a certain part of the Netherlands but I have a few friends/old friends who are autistic from school and they have never been treated badly by anyone. Everyone knew about their condition and took it into account. There weren’t any superficial judgemental people like what’s described above. I feel blessed to have avoided those.

Unfortunately, this happens a lot here in America. This is due in part to a terrible organization known as Auti$m $peak$.

Autism Speaks’ senior leadership fails to include a single autistic person. Unlike non-profits focused on intellectual disability, Down Syndrome, Cerebral Palsy and countless other disabilities, Autism Speaks systematically excludes autistic adults from its board of directors, leadership team and other positions of senior leadership. This exclusion has been the subject of numerous discussions with and eventually protests against Autism Speaks, yet the organization persists in its refusal to allow those it purports to serve into positions of meaningful authority within its ranks. The slogan of the disability rights movement has long been, “Nothing About Us, Without Us.” Almost nine years after its founding, Autism Speaks continues to refuse to abide by this basic tenet of the mainstream disability community.

Autism Speaks has a history of supporting dangerous fringe movements that threaten the lives and safety of both the autism community and the general public. The anti-vaccine sentiments of Autism Speaks’ founders have been well documented in the mainstream media. Several of Autism Speaks’ senior leaders have resigned or been fired after founders Bob and Suzanne Wright overruled Autism Speaks’ scientific leadership in order to advance the discredited idea that autism is the result of vaccinations. Furthermore, Autism Speaks haspromoted the Judge Rotenberg Center, a Massachusetts facility under Department of Justice and FDA investigation for the use of painful electric shock against its students. The Judge Rotenberg Center’s methods have been deemed torture by the United Nations Special Rapporteur on Torture (p. 84) and are currently the subject of efforts by the Massachusetts state government and disability rights advocates to shut the facility down. Despite this, Autism Speaks has allowed the Judge Rotenberg Center to recruit new admissions from families seeking resources at their fundraising walks. We believe this is not the type of action you anticipated when you agreed to provide support to Autism Speaks events.

Autism Speaks’ fundraising efforts pull money away from local communities, returning very little funds for the critical investments in services and supports needed by autistic people and our families. Only 4% of funds donated to Autism Speaks are reinvested in services and supports for autistic people and our families. Across the country, local communities have complained that at a time when state budget cutbacks are making investment in local disability services all the more critical, Autism Speaks fundraisers take money away from needed services in their community. In addition, while the majority of Autism Speaks’ funding goes towards research dollars, few of those dollars have gone to the areas of most concern to autistic people and our families–services and supports, particularly for autistics reaching adulthood and aging out of the school system. According to the Department of Health and Human Services’ Inter-Agency Autism Coordinating Committee, only 1% of Autism Speaks’ research budget goes towards research on service quality and less than one-quarter of 1% goes towards research on the needs of autistic adults.

Autism Speaks’ advertising depends on offensive and outdated rhetoric of fear and pity, presenting the lives of autistic people as tragic burdens on our families and society. In its advertising, Autism Speaks has compared being autistic to being kidnapped, dying of a natural disaster, having a fatal disease, and countless other inappropriate analogies. In one of its most prominent fundraising videos, an Autism Speaks executive stated that she had considered placing her child in the car and driving off the George Washington Bridge, going on to say that she did not do so only because she had a normal child as well. Autism Speaks advertisements have cited inaccurate statistics on elevated divorce rates for parents of autistic children and many other falsehoods designed to present the lives of autistic children and adults as little more than tragedies.

Autism Speaks’ only advisory board member on the autism spectrum, John Elder Robison, announced his resignation from the organization this month in protest of the organization comparing autistic people to kidnapping victims and claiming that our families are not living, but merely existing, due to the horror of having autistic people in their lives. In his resignation letter, he discusses his four years spent attempting to reform the organization from the inside without success, stating, “Autism Speaks says it’s the advocacy group for people with autism and their families. It’s not, despite having had many chances to become that voice. Autism Speaks is the only major medical or mental health nonprofit whose legitimacy is constantly challenged by a large percentage of the people affected by the condition they target.

Also, they released a terrible commercial called “I am Autism”.

youtube

Here is the transcript.

“I am autism. I’m visible in your children, but if I can help it, I am invisible to you until it’s too late. I know where you live. And guess what? I live there too. I hover around all of you. I know no color barrier, no religion, no morality, no currency. I speak your language fluently. And with every voice I take away, I acquire yet another language. I work very quickly. I work faster than pediatric aids, cancer, and diabetes combined And if you’re happily married, I will make sure that your marriage fails. Your money will fall into my hands, and I will bankrupt you for my own self-gain. I don’t sleep, so I make sure you don’t either. I will make it virtually impossible for your family to easily attend a temple, birthday party, or public park without a struggle, without embarrassment, without pain. You have no cure for me. Your scientists don’t have the resources, and I relish their desperation. Your neighbors are happier to pretend that I don’t exist—of course, until it’s their child. I am autism. I have no interest in right or wrong. I derive great pleasure out of your loneliness. I will fight to take away your hope. I will plot to rob you of your children and your dreams. I will make sure that every day you wake up you will cry, wondering who will take care of my child after I die? And the truth is, I am still winning, and you are scared. And you should be. I am autism. You ignored me. That was a mistake. And to autism I say: I am a father, a mother, a grandparent, a brother, a sister. We will spend every waking hour trying to weaken you. We don’t need sleep because we will not rest until you do. Family can be much stronger than autism ever anticipated, and we will not be intimidated by you, nor will the love and strength of my community. I am a parent riding toward you, and you can push me off this horse time and time again, but I will get up, climb back on, and ride on with the message. Autism, you forget who we are. You forget who you are dealing with. You forget the spirit of mothers, and daughters, and fathers and sons. We are Qatar. We are the United Kingdom. We are the United States. We are China. We are Argentina. We are Russia. We are the Eurpoean Union. We are the United Nations. We are coming together in all climates. We call on all faiths. We search with technology and voodoo and prayer and herbs and genetic studies and a growing awareness you never anticipated. We have had challenges, but we are the best when overcoming them. We speak the only language that matters: love for our children. Our capacity to love is greater than your capacity to overwhelm. Autism is naïve. You are alone. We are a community of warriors. We have a voice. You think because some of our children cannot speak, we cannot hear them? That is autism’s weakness. You think that because my child lives behind a wall, I am afraid to knock it down with my bare hands? You have not properly been introduced to this community of parents and grandparents, of siblings and friends and schoolteachers and therapists and pediatricians and scientists. Autism, if you are not scared, you should be. When you came for my child, you forgot: you came for me. Autism, are you listening?"

#simnovels

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sophygurl · 7 years

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Beyond the Fix or How do I Live This F***ing Life? - WisCon 41 panel write-up

These tend to be long and only of interest to specific segments of folk so click the clicky to read.

Disclaimers:

I hand write these notes and am prone to missing things, skipping things, writing things down wrong, misreading my own handwriting, and making other mistakes. So this is by no means a full transcript.

Corrections, additions, and clarifications are most welcome. I’ve done my best to get people’s pronouns and other identifiers correct, but please do let me know if I’ve messed any up. Corrections and such can be made publicly or privately on any of the sites I’m sharing these write-ups on(tumblr and dreamwidth for full writings, facebook and twitter for links), and I will correct ASAP.

My policy is to identify panelists by the names written in the programming book since that’s what they’ve chosen to be publicly known as. If you’re one of the panelists and would prefer something else - let me know and I’ll change it right away.

For audience comments, I will only say general “audience member” kind of identifier unless the individual requests to be named.

Any personal notes or comments I make will be added in like this [I disagree because blah] - showing this was not part of the panel vs. something like “and then I spoke up and said blah” to show I actually added to the panel at the time.

Beyond the Fix or How do I Live This F***ing Life?

Moderator: R. Elena Tabachnick. Panelists: Kate Carey, Shayla D, Jesse the K, Lenore Jean Jones

#BeyondTheFix - for some good livetweets and resources

The panel started out with some good-natured joking about the moderator being late for reasons having to do with the panel topic and how they’d just get started.

Jesse introduced herself by saying “I’m a loud mouth”, as well as talking about how she’s been coming to WisCon for a long time and worked with others on improving access at the con and has watched how WisCon has improved and embraced better understandings around disability over the years.

Kate introduced herself by saying this was her 4th WisCon and that the membership assistance fund is what allowed her to get to her 1st one. She’s a champion of talking about invisible disabilities, and as a larger woman she gets especially tired of people who say “well if you exercises more...” [hear hear Kate!]

Lenore introduced herself by telling us this was her 20th WisCon, that she is Hard of Hearing but passes as hearing, and also that she is depressed. She touched on how depression is often co-morbid with other disabilities, or is often exacerbated by other disabilities.

Shayla introduced herself as someone who is both disabled and taking care of her mom who is disabled. Shayla talked about how she is just blind enough that she can’t drive but not blind enough that anyone gives her any money for it. When her pain symptoms were growing, she had doctors tell her it was all in her head, and once it was diagnosed, she was like “why yes, the cause was in my pituitary gland which is in my head thanks!”

Elena came in during the intros so was able to give hers at the end of this - she has a rare genetic disease, but insurance won’t pay for the genetic testing to confirm this. She never thought of herself as disabled, as she’s had this since she was a kid. She didn’t have a diagnosis, so everyone just thought she was weird. She kept getting more disabled, and had to keep giving up more things.

Right now she can’t leave her house for long, she can’t wear shoes or socks. It took her a long time to call herself disabled, but now she loves the identity - it helps to be able to say this about herself.

Jesse talked about having had mental health issues “since jump”, but that she didn’t know it was something that could be dealt with. In her 20′s, she started having pain everywhere and was diagnosed with fibro and cfs. Eventually, she stopped working and got to have the Disabled label.

She has also worked with Blind and Deaf communities and realized how much assistive technology and community can help. She applied that to herself, and realized how much using a wheelchair could help her. She was waiting for some authority figure to give her the Disabled label, but finally just took it and claimed it for herself.

A big change came when Jesse realized she didn’t have to be independent but could be interdependent. [I have a buncha stars and underlines in my notes right here - thanks Jesse!]

Kate talked about struggles she’s had because when she was “just fat”, she didn’t want that identity to define her life or limit her. Then she became sick and wanted to feel the same way about that but her symptoms included being unable to breathe and she had doctors telling her to lose weight. She felt like fatness was seen as a moral failing. She felt ashamed and at fault for her own sickness.

She realized she was willing to go to bat for friends, for example, who smoked and had COPD - but when it came to defending herself, it was another issue. At first she took on the label of “sick” but not “disabled” because sickness was something you could get better from. WisCon has been helpful to Kate in accepting disability.

Shayla talked about how her first neurological disorder was something that happened primarily to fat people. She found her family blamed one another for making her fat, and therefore causing her blindness. Her stance was - who cares how I got this way, this is now, let’s deal with it.

Shayla likes to pop out her white cane because her other disabilities are invisible, but when she uses the white cane, she’s more visible as disabled. When people tell her “you don’t look blind”, she replies “you didn’t look like an asshole...” (general laughing from the audience).

She talked about wanting something like a “crip card” to be able to show to people to prove she’s really disabled. Much laughter and discussion ensues on this topic.

Lenore talked about having impostor syndrome around disability; being “not disabled enough” or “not Deaf enough”.

At this point, a funny conversation happens around the live captioning of the panel and how other panelists are reading over Lenore’s shoulder in fascination as their own words scroll by.

Lenore continued with a story about talking with Jesse and apologizing for not being able to hear her and Jesse telling her not to say sorry about that and how much it meant to her. She didn’t know she was Deaf until she was 15, so she had subconsciously learned to lip read.

Shayla said - instead of apologizing, say “thank you for being patient with me” and referenced a comic online on the topic (check the hashtag - it’s linked to a couple of times).

An audience member brought up that all of this apologizing in regards to our disabilities has to do with the social model of disability.

Elena talked about having to say no to things and how adopting the Disabled label helped to give her permission to do that. Before that, she was broken and felt at fault.

Kate talked about how our self-worth is based on our ability to work and contribute something to society. She stated that she could work under some very specific circumstances, but even then she would lose much needed benefits. She gets told “if you just had more gumption!” We apologize because our disabilities are seen as a moral failing.

[Kate then made some comments comparing abelism to racism which felt a lil oppression olympic-ey to me in regards to wishing people could see disabilities as just a part of who we are the way race is. My personal thought on this is that there absolutely are people who see poc as having a moral failing due to their race, as well, so I get where Kate was trying to take this analogy but I feel like most analogies of this kind tend to fall apart on further inspection. Another comment was about how she strives to do colorblind reading so she isn’t taking the author’s race into account when choosing a book or while reading it, which again, I think is a very well-meant intention but that taken in practice as a whole would end up with many poc authors not being read because publishing and marketing practices are already set up against them so if we don’t specifically make attempts to read more books written by poc - we won’t be finding as many of them to read.

I discussed this with Kate afterwards and she agrees that the analogy falls apart and wishes she’d phrased things differently, just FYI.]

Somewhere in there, Shayla made her patented case against kale-pushers and I jumped in to add “well if you Deep Fry the kale...”

(Either Elena or Lenore, my handwriting is not clear here) said that if people blame us for our disabilities, it allows them to believe that it won’t happen to them.

Jesse brought up the role capitalism plays in all of this, and how it’s not a good system. Also the failure of the medical system - it doesn’t work for people like us, so we annoy them. Additionally, some spiritual traditions have the idea of health as being a gift from God, so what does that mean for those of us who don’t have it?

Shayla talked about social issues involved when you have to cancel on friends so many times that they give up on you.

Elena talked about her dislike of the Paralympics - not the people who do it, but the cultural stuff around it as “inspirational.” This allows people to think that even if they do become disabled, they can be one of those ones who can do all this other stuff.

Often, even if fiction, you only know a character is disabled due to the occasional mention of their wheelchair - otherwise they’re described exactly like the other characters. They never get tired, need downtime, require help with transfers or bathing, etc. It’s not a realistic portrayal of disability.

She added on to what Shayla had said above saying that she has difficulty socializing because she can’t leave her house.

Kate talked about how online gaming helps her - she can interact with people on her own terms. She talks about “painsomnia” [ha! yes! great word!] and how she is often up at random times and being able to socialize online at those times helps.

Kate and Lenore both agree that the word “should” is toxic.

Kate said another helpful aspect of the gaming was that she found games she was good at. She was good at her job and losing that was hard, so finding something else she could feel proud of herself about has helped a lot. The fact that this is something that isn’t valued by society is frustrating.

She revisited the topic beforehand about inspiration porn and said it’s not even about the disabled person really, but about the abled people around them.

Kate talked about giving herself a gold star some days just for getting out of bed, or getting dressed, etc. She talked about her “standing skills” as another thing society doesn’t value enough.

Jesse discussed how she has coped over the years by waving her hand up and down. She defined herself as a brain in a jar who could learn things - and then that was the last thing that she lost. She has coped in part by splitting herself somewhat mentally from past selves and can look back and say that she is so glad to know that person that could do those things without that being a judgement on who she is today. [my notes at this point read “me: crying” because I was sobbing my eyes out at the wisdom of this that I desperately needed]

Lenore said she is still working on that whole gold star thing. She is trying to reframe things from “I ought to be able to...” to “this is what I can do now.” [phew! yea.]

Elena talked about still doing the grief thing and how depression is connected to not being able to do things. [my notes: the grief never fully stops]

She talked about being in an online writing community but how she isn’t writing now, and re: Kate’s gaming thing - she is still seeking that thing that she’s good at and can do.

Kate said it’s okay to grieve it the same way you would the loss of a family member. Grief continues on but it’s not always as hard as it is at first all of the time.

An audience member talked about how all they can currently do is work and sleep and how to survive if they can’t get disability. They are worried because they need insurance but can’t work full time - when do they reach a point where they can apply for disability? The panelists all answer pretty much together that it sounds like they already ARE at that point - it’s time to start applying. Fill out the forms for your worst days, not your best - that’s a common mistake.

The audience member said their doctor tells them “well you’ve managed so far...” I and other audience members and the panelists all agree - then they need a new doctor!

Jesse emphasized that the system has failed us, not the other way around.

Kate brought up the ticket to work program and told the audience member to start the disability process now so they don’t get stranded. [v. good advice]

Elena talked about getting a geriatric doctor if you can because they’re less concerned with issues around weight loss and about fixing you - they know you’re going to die anyway so shrug. (big laugh)

There’s a moment where everyone sings Jesse’s praises as someone who is both a good resource on how to manage this stuff on a personal level and as someone who has good resources for others. I nodded emphatically through all of this and here’s another great thing about Jesse - instead of deflecting, she just smiled and took the compliments. What a good role model!

Shayla talked about her struggles with being able to work for awhile, then crashing, being homeless, being able to work for awhile, rinse repeat and having people say “well you can work...”

(Edited to add at Shayla’s request that she also said “I COULD work... If it was at a job I could do in the dark, on my back, *legally*. (Hell, illegally has crossed my mind many a time.)”)

Kate talked about how applying for disability is work.

Shayla talked about the difficulty in not knowing how she’s going to feel day to day, even minute to minute.

Lenore stressed the importance of asking for things that we need.

I added from the audience that to add to the list of toxic words - “burden”. Thinking of ourselves that way makes it hard to ask for what we need.

Jesse talked about how giving is a help too. So asking for help allows other people to give in that way.

Kate said that love is asking for help, because it shows that we’re putting our trust in them.

An audience member talked about The Ultimate Guide to Sex and Disability as being a beneficial resource to reclaiming their sexuality.

Another audience member talked about a youtuber - ability powered - a disabled gamer who likes to help other disabled folk in gaming.

Someone else from the audience talked about having a sister who is disabled who she lives far away from and wants to know how to help.

Kate stressed listening and acknowledging. Ask what she is doing not how she is doing. Sometimes the best thing is getting to vent to someone who isn’t the same three people she talks to everyday [yes, this!]. It can be really helpful to be asked if you want to vent or need help problem solving - or even do you just want me to do the talking for awhile.

An audience member offered that arranging for things like prepared meal deliveries and cleaning can be of use.

Kate said framing things like the above as “I want to do this for you” so they feel better about accepting it. She also added that she enjoys skyping with people she doesn’t get to visit with so she can actually see them.

Kate talked about having to skype to her mother’s funeral and how at least she was able to be part of it in that way. She also brought up FB live as ways to take disabled people to things they couldn’t otherwise go to.

An audience member also stressed the importance of knowing the people in their lives WILL say no if they can’t, which makes it easier to ask them. They can trust them to be honest about their limits.

Lenore emphasized offering to just hang out with someone and not talk if they don’t have the energy to talk - just be there with them.

We hit overtime for the panel and Kate said “I just have a few more things” - at which point I lol’ed (having paneled with Kate before) and closed my notebook so I don’t recall what those few more things were - sorry!

But do check the hashtag for this one, as folks did add many of the resources that were brought up during the panel.

#beyondthefix #beyond the fix #wiscon #wiscon 41 #disability #wiscon41 #wc41 #life with chronic illness

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ericschumacher · 4 years

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A new post, (Welcoming Chronic Sufferers), is available at Eric Schumacher

New Post has been published on https://www.emschumacher.com/welcoming-chronic-sufferers/

Welcoming Chronic Sufferers

This guest post by Jennifer Ji-Hye Ko explores how the local church can welcome, include, and minister to chronic sufferers. It is part of my “Welcoming…” series, which features first-person articles on how to welcome various demographics into our lives and church communities. Previous installations include “Welcoming the Hearing Loss Community,” “Welcoming the Eating Disorder Community,” and “Welcoming Single Parents.”

You’re feeling it, aren’t you? That desperate excitement. The quarantine restrictions may soon be lifted, putting an end to staying at home – an end to virtual meetings and church services, distance learning, and homeschooling. I am truly excited for you, but not necessarily with you. You see, as the majority of people will be rejoicing in their freedom, many like me will experience a loss.

Chronic Suffering

While I am a wife and mother as well as a servant minister in my church, I have also been disabled for 15 years from chronic illnesses. Every day I have woken up with some measure of all-over, system-wide pain. If I can get out of bed, it takes about an hour to warm up my body before it is safe to do so. By my mid-twenties I was inexplicably disabled for three years before receiving my first diagnosis of Complex Post-Traumatic Stress Disorder with Psychosomatization as a result of childhood traumas I had endured.

My second diagnosis was Fibromyalgia/Chronic Fatigue Syndrome which would further explain fatigue and widespread pain, as well as a myriad of other strange symptoms. Involuntary muscle tension chronically pulls my muscles so tight that I can sprain or tear a muscle simply by moving. The fatigue makes it difficult even to breathe some days. Sitting up can take maximum effort leaving me in shivering convulsions.

Last year overt symptoms of Mast Cell Activation Syndrome (MCAS) left my skin feeling like I had a second-degree burn from head to toe. This makes wearing clothes problematic which in turn makes going into public problematic. Between the unique pain and crippling fatigue, it became distressing, unwise, and at times dangerous for me to leave the house.

This past January, while in treatment for MCAS, I was found to have Lyme disease. Lyme has been attacking my nervous system causing problems such as intense sensory sensitivity similar to chronic migraines. Most recently, symptoms of psychosis are becoming more pronounced taking portions of my agency. Any stimuli can trigger an outburst. Now realizing that most, if not all, of these conditions have been building since childhood, it is abundantly clear why leaving home has become increasingly painful for me these past 15 years.

COVID-19

For the past few months, the rest of the world has joined with people like me to experience a degree of what it means to be homebound and shut-in. Church service has been made accessible in a new way as many churches are now providing live-stream. Community groups and Bible studies are meeting via Zoom and other chat services. People are suddenly acutely aware of the weakest among us. Since March, those of us who have been on the fringe of society, shut up in our homes long before this pandemic started, have been able to be included in ways we weren’t before – and that may soon come to an end.

Church, as you celebrate that first Sunday together again, don’t forget us. I’m not saying celebrate less or feel guilty – by no means! It is a sweet blessing to gather together in person with other believers. But as you are celebrating, remember us. Bear witness that we are here and that we matter. Here are a few ways to continue welcoming members of the church who are homebound in the days and weeks to come.

Church Services

In the first week of quarantine here in Los Angeles, a dear friend of mine texted me exactly what I was feeling: “It only took a pandemic, but we finally got live-streamed services.” We had been discussing ways to make Sunday service accessible for a little while but, for various reasons, it was slow going. It is a big undertaking to provide accessibility. The amount of work it requires can be overwhelming and can cause many people to burn out and/or give up. But for many of us who can’t make it to church on a Sunday morning in normal times, we can feel left out or cut off because of how difficult it can be to love us sometimes. The reality is that it took the majority needing live-stream service for chronic sufferers to be included, and it’s easy for that thought to bring up feelings of anger and bitterness, whether warranted or not. Ideally, it would be a huge blessing for churches to continue live-streaming after the restrictions are lifted. Where that’s not possible, it would be both loving and appreciated to openly acknowledge the lack and to continue to make church services as accessible as possible.

Compassion

This pandemic has disrupted everyone’s life. Because of how it has, many people now have a glimpse into the daily frustrations and longings of chronic sufferers and those who are regularly homebound. Set time aside to reflect on your time in quarantine and how your feelings might mirror those who have experienced being shut in before now. Write down how you feel during this time and talk to God about it. Be honest even about your most vulnerable, and your most petty, thoughts, and emotions. Then think how a friend might have felt losing her job when illness took over. Or how protecting one’s health can be a daily concern for some. How hospital visits may be necessary but always run the risk of adding infection. Or how not seeing another human being besides one’s family for months can cause an indescribable ache. Not only will this be a sweet meditation with God, but it’s also a way to gain empathy for shut-ins in our church family long after this pandemic is behind us.

Community

While those of us who are homebound desire community, it is often difficult to reach out and can be tiring to do so. Friends can help take that burden by continuing to make community group meetings available via video chat, even after groups begin meeting in person again. It would be a huge blessing for groups to take the initiative to have a laptop and good WiFi set up for members who will still be unable to be physically present. This is also valuable for one-on-one meetings that can’t happen in person, whether they are social gatherings, Bible studies, or other fellowship opportunities.

For years, I overextended myself beyond my capacity to make sure I was physically attending church events. It never occurred to me that, because I am sick, the church could, and should, be coming to me. Recently I expressed to my husband that it feels as though the church has been coming around us much more. He offered another perspective. For the past 10+ years, I have had one faithful friend who has kept a weekly standing appointment to visit. While I do communicate with others via text and the occasional call, this friend has been my main human contact with the church for some time. When she goes on vacation or has an illness flair herself, I feel the absence. Recently another friend started intentionally reaching out through text, phone calls, and socially distanced in-person visits. My husband conjectured that, as starved as we have been for community, this one extra friend carries a profound weight. But this weight ought not to be carried by one or two members of the church body. Each person has unique abilities, availability, gifting, and personal relationships designed to be a blessing to those suffering. Unfortunately, since chronic sufferers are not visible, it can be all too easy for us to fall through the cracks.

Bear Witness

As you have likely experienced in quarantine, staying at home creates a black hole pulling our attention into the vortex of our own navels. Isolation makes it really difficult to remember that other worlds exist outside our own. The days grow longer without activities to break them up, and we can begin to feel as though we are forgotten. This is where “tiny texts” and “gifts of remembrance” come in.

It is noble and godly to pray for one another; however, it is challenging to feel the prayers of others if we don’t hear them ourselves. Honestly, it’s hard to feel much outside the continual current of pain and psychological episodes as well as the hurricane of doctor’s appointments, medical procedures, and self-care routines. But a phone call or text can go a long way. You can text your prayer or text, “I prayed _____ for you today.” It’s also a blessing when people send texts about their day and share their own struggles and celebrations. It brings us out of ourselves and invites us to engage in the lives of others. This is a small, concrete way to encourage the exhausted and strengthen the fainthearted (Isaiah 35:3).

Gifts of remembrance are also wonderful signposts to remind us that we are known and remembered. They are gifts that keep on giving. I have a painting on my wall that is so perfect, so spot-on, that I cried upon receiving it. My eyes are filling with tears just writing about it now. When I look at it from my bed, I am comforted that Camille knows me and remembers me. When my husband pulls out his whiskey sampler, I am encouraged that the Rosses know and remember him. And when my daughter wears her favorite princess dress, I am blessed that Marisol knows and remembers her.

Another way to bear witness is to acknowledge us to others. On that fine Sunday when you meet together once again, verbally acknowledge those of your church family who will not be present to attend services. We feel invisible and to a certain degree, we are invisible. When we are safe at home we are out of sight and very easily out of mind. Additionally, relationships are a give and take. Because we can’t give much and need a lot, we can sometimes feel like leeches, no matter the sacred purity and wisdom the Lord is refining in us. Helping the rest of the congregation remember us is an act of love and advocacy that affirms we are, as Paul says, indispensable to the church (1 Corinthians 12:22), equally part of the body even if we cannot be there in the flesh.

Be Patient With Us All

Remain patient and remember that patience is active. Being patient with the weak means sitting with us when we are in pain, talk to us when our minds are spiraling, grieving with us as we endure daily losses, bringing us a meal or groceries (again), and eating with us – doing so without expectation of an end to your patience or our need for it. In our fast-paced age, our patience grows thin fast and we are less likely to long suffer unless the Lord gives us circumstances that demand it. Put it in your mind that there is no time limit on suffering or grief, and that the Lord will always provide strength to the willing heart. So prepare yourself and stay with us. Not only will you encourage the fainthearted and help the weak, but you will also slowly begin to really know us and see us as our Savior does. Even more, you will be our witness, Christ to us in times when our vision grows weak. Together we will reflect the body as it is meant to be, loving and serving one another, reflecting God’s glory to the world, whether we are sheltering at home or traveling far beyond our own thresholds.

Jennifer Ji-Hye Ko is a writer, poet, and servant minister at Cornerstone Church West Los Angeles. She lives with her husband Joon and their daughter, remaining tenacious amid her various physical and mental illnesses. You can follow Jennifer on Instagram at @jennifer.jihye.ko.

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#chronic suffering #COVID-19 #suffering #Welcoming

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