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Stop Questioning Whether I’ll be a Good Mum Because I’m Disabled

By Hollie-Anne Brooks / 2022-04-23
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I want to be a mother. It’s a simple premise, isn’t it? I want to hold my own baby in my arms with the man I love by my side and raise that child to be wild and free and curious (and a writer because both of its parents are writers therefore it just has to be that way).

I’m in a serious relationship with a man who shares the same faith as me, we’re planning marriage and we named our future children on our first date. All this should be in reach but I’m forced to question it. Why? Because I’m disabled. 

As a disabled woman, every part of my anatomy is on show to the world and up for conversation. “What happened to you?” “What’s wrong with you?” “Do you need some help?” At every turn of my legs or my wheels. When it comes to expressing that I want to be a mother, like everything, it’s met with a ton of questions that a non-disabled person wouldn’t have to face.

The first experience was with my doctor, as I eagerly question them about my chances of conceiving with the rare form of Polycystic Ovary Syndrome I have. 

“But what about your M.E and Functional Neurological Disorder?” They ask. Having just had them tell me my chances of conceiving are pretty low, I’m in shock.

What about it? Yes, I sometimes use a wheelchair. Yes, I can’t feel my left leg. Yes, I suffered medical trauma when I got meningitis and sepsis. I didn’t much reply, instead I took on a whole heap of internalised ableism.

My Mum questioned it too. Would I be ok to mother a crying, sleep-deprived child if I had a condition that already makes me perpetually fatigued? I have no doubt, but when others start to question your role as a disabled person coupled with the identity of being a mother then you do too.

We don’t see enough disabled parents in the media.

We all know there’s a pity or porn rhetoric around disability in the media and we’re either ones to feel sorry for or inspiration porn because we’ve just won triple gold in the Paralympics while juggling our third leg behind our broken backs. But when it comes to disabled parents- where are they? 

I turn to Sophie from FashionBellee on Instagram. With over 20,000 followers on Instagram, Sophie shows life as the most colourful and positive disabled mum out there as she navigates parenthood just like any other mother with toddler Zyra.

Sophie’s reels show her pushing a pram while in her electric wheelchair, using a hoist to get in the pool to take Zyra swimming and working with some of the biggest brands in the world to show disabled mums exist.

In a similar hurrah for representation, the now-iconic Then Barbara Met Alan shows Barbara getting pregnant and raising a child as a wheelchair-using mum. 

But who else do we turn to to see positive representation of disability and parenthood? We need more conversations around it and a conversation is exactly what I had with my boyfriend Adam.

“Sure, I expect that at time I’ll have to do more of the parenting [because your disability will mean you have to rest] but I want to be a hands on parent and spend time with our children” said Adam when I quizzed him deeper.

While we’re not actively trying for a child yet, it’s the ultimate goal in our relationship and if the man I aim to become a parent with doesn’t have an issue with my disability and my ability to be a parent then why should anyone else?

Sure, there’ll be challenges as a disabled mum. I expect there’ll be times I can’t do the night feed because my fatigue is too strong. I expect I might have to use my wheelchair for several weeks after the birth as my brain navigates recovering and functioning as a normal person.

And you bet my coordination as I juggle wheels and a pram will just go to pot but the truth is that only Adam and I can navigate these challenges that so many other parents who don’t have disabilities face.

When society is doubting your ability to be a mother, it can be easy to curl up and resign yourself to being “less” but it’s important now more than ever that we push back against that.

Disabled people deserve to be parents, disabled people will be great parents and terrible parents just like any other demographic group and disabled parents can thrive in society if society lets us… which is our whole fight in the first place.

So this is a call to all disabled parents- make yourselves known. Be loud. Celebrate your differences.

And know just because you’re disabled, doesn’t mean you’ll face issues when it comes to parenthood. You’ve got this, mama (or papa)

The post Stop Questioning Whether I’ll be a Good Mum Because I’m Disabled appeared first on The Unwritten.

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Accommodations for Disabled People Aren’t Special Treatment – They’re Basic Human Rights

By Phoebe Jenkins / 2022-04-21
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As a non-disabled person, accessibility is something you never have to think about. Before my disability impacted me, it never crossed my mind. But that is something that needs to change.

Accessibility comes in many forms, from leniency on work deadlines, ramps, lifts, hearing loops to closed captions, access to medical treatment online, digitally, and much more. This variety of ways to accommodate accessibility is one of the reasons non-disabled people don’t do it. They don’t know where to start.

I spoke to two members of the disabled community about their experiences with accessibility.

Laura told me about her experiences on set. She explained that the production team was incredible, asking her to create a list of essential access needs, which were all provided.

“I felt very lucky because, even though it was a professional film, it was relatively low budget and time-restricted, but they wanted to make sure I was as comfortable as any of the other able-bodied actors on set.” 

Her experience during university, however, was quite different; 

“you have to be quite proactive when asking for accommodation, which is incredibly tiring when you’re disabled”. 

Though able to get accommodations at university, none of it came easy, especially when it came to transport accommodation;

“The assessor hadn’t told the company that I required wheelchair access, their response was that they already had too many wheelchair school runs.” 

Though she was grateful to receive her Disability Support Allowance, she says that the support that she needed took the entire semester to arrive, complicating her ability to learn, and participate in academic writing. Unfortunately, this is a very common experience for disabled students

One good thing about University, however, was that Laura was given a Disability and Student Wellbeing team, which allowed for a support plan to be put in place. Her tutors and practical assistant were a great source of support too. She says, “They have given me so many extensions when my health had deteriorated, offered any extra support possible and had several zoom calls with me just to check in on me.”

I also spoke to Juliana; who told me about the discrimination she faced in education in America.

“My disability began affecting me significantly throughout middle and high school. When I needed accommodations for the first time, I was shocked by the response that I got.” 

Juliana continues by saying that while accommodations she was seeking were guaranteed by law, as per the Americans with Disabilities Act, that didn’t stop the discrimination;

“Teachers would question the legitimacy of my disability, asking if I was sure that I was actually sick, if I was just lazy or misdiagnosed. A science teacher questioned whether Mitochondrial Disease was something that he had to accommodate for, despite teaching what mitochondria was.” 

Getting basic accommodations was an uphill battle; “It was like every adult in school was working against me, like teachers took pleasure in denying me accommodations I was legally entitled to.”

Juliana says that her experiences with accessibility in academia continued at a major university during COVID. “I remember when things first began to be put online. I thought that this was a turning point for disabled students like me. I couldn’t have been more wrong. As soon as the world decided to be done dealing with COVID, things went back to ‘normal’, but this normal wasn’t what the same, it was worse.”

Getting accessibility accommodation is a never-ending battle, where those that should win, the disabled community, rarely do. 

My family and I fought hard to receive at home education, which started out with online schooling. I thought this would be a fresh start and this school made an awful lot of promises, yet fulfilled none of them. After less than a year, I was forced to drop out due to being treated differently to the other students, as their only student with a physical disability.

Many in the community have negative experiences with accessibility in education. It is common to be treated as less worthy for having access requirements, which leads to disabled people being left out of basic rights, such as education or employment.

Difficulties and struggles with accessibility sadly don’t stop with access to education, nor has it for anyone else like me who experienced ableism in education. We have to live through it every time we leave the house, go to medical appointments. 

We experience it when doing practically anything. 

Shops aren’t accessible, nor are cinemas, parks, gyms, or even hospitals. It is a fight to be able to do anything when you’re disabled, and not just because you’re disabled, but because of the way that the world treats your disability. 

Disabled people make up a huge portion of the population. Everyone in their lifetimes, will experience or be affected by disability. So, why are we viewed as a less important part of life? Why are our access needs fobbed off, and not facilitated? 

The world was funded and created by non-disabled people. It wasn’t created for us and non-disabled people refuse to remodel or adapt it for us. We live in a world where disabled people’s needs aren’t viewed as anywhere near as important as those of non-disabled people, and that is a huge part from where the problem in receiving accessibility measures stems.

It has long been time for non-disabled people to realise that the disabled community is the backbone in society, and that they need to develop empathy and willingness to accommodate their disabled counterparts. 

At the end of the day, the refusal to accommodate someone is, in every way, an act of discrimination. It is time we start treating it as such. Everyone needs to start calling ableism out, not just disabled people who experience it. 

We should never have to beg to live with dignity, and to be able to access the things that we need to do basic activities and have access to fundamental needs. Non-disabled people would never have to, so why do we? Something needs to change.


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The post Accommodations for Disabled People Aren’t Special Treatment – They’re Basic Human Rights appeared first on The Unwritten.

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Disabled and Sexual: We Don’t Want Ableists at our Sex Parties

By Hannah Shewan Stevens / 2022-04-12
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Disabled and Sexual is a column by Hannah Shewan Stevens which explores all the challenges, comedy, and fun that disabled people experience as sexual beings, even while we are desexualised by a predominantly non-disabled society.


The desexualisation of disabled people is a tale as old as time. In my first column for The Unwritten, I outlined the historic battle disabled people have fought against rampant desexualisation. Sadly, the presumption that none of us are interested, or capable, of sex endures largely unchallenged and is now openly supported by fellow disabled people. The latest a Twitter user claiming to speak a thought preying on everyone’s mind,

Why would anyone bring a wheelchair user to a sex party? 

To state the obvious: disabled people are sexual beings. A physical, mental, developmental, or intellectual disability does not spell the end of sexual pleasure, romance, or partnered sex. 

If you’re one of the people who readily agreed with this hellishly rambling Twitter thread, then it’s time to broaden your horizons.

Sex parties and clubs that do not welcome disabled participants are missing out on our wealth of sexual experience, sensual bodies and all the kinky wonderfulness that we bring to the table. Plus, actively excluding disabled people, and poking fun at exclusion on social media, feeds the ableism society thrives upon. 

Partnered sex, group sex and sex parties are about shared pleasure and reveling in the pleasure of others. Limiting who you include to satisfy your own ableism is inherently selfish and demonstrates a woeful misunderstanding of the foundation of sex practices. 

If you want a picture-perfect orgy, stay at home and enjoy a picture-perfect sex party in the comfort of your own head. Masturbate to your unrealistic idolisation of perfect, athletic, able-bodied partners and redirect ableist comments to the bin. 

Engaging in sex with people who do not look like us and have different life experiences is an opportunity to learn about ourselves, broaden our understanding of sex and try out thrilling new experiences. Dictating a blanket ban on wheelchair users at your sex parties is limiting the threshold of pleasure you get to experience. 

The original tweet also disregards the fact that wheelchair users have a significant range of mobility. Some are paralysed and others are ambulatory wheelchair users, so dictating the exclusion of all wheelchair users betrays a failed understanding of the incredible diversity of the disabled community and our abilities.  

I could waste thousands of words picking apart every word of these Tweets and bore our readers with an angry rant but the issue is far wider than one person’s point of view. 

We know that disabled people are excluded from sexual spaces. We know that disabled people are pulled from or excluded from sex education around the world.

We know that disabled people have disproportionate rates of STIs and experience higher rates of sexual violence and domestic violence. We know that disabled people are at risk and that the systematic stripping away of our sexuality makes us more vulnerable to violence, abuse and sexual health issues, not less.

We know that ableism excludes disabled people from many sexual spaces. We know that many sex clubs are inaccessible for people with physical disabilities and neglect to accommodate the needs of neurodivergent people. Contributing to this widespread ableism by discounting the value disabled people bring to sex parties perpetuates it. 

But, on one key point, I find some harmony. Including disabled people in sex parties does often require pre-planning. Venues need to be accessible, adapted sex toys and swings need to be included and disabled people must be protected from ableist attitudes. 

No one with prejudice should be invited to a sex party. If someone is uncomfortable with having sex with a disabled person, that is their problem and all disabled people should be shielded from these views where possible. Sex parties are designed to be safe spaces and prejudice has no place. 

You can still be spontaneous in the moment and explore with a disabled person sexually without prior preparation, but it does mitigate risks and barriers. Organisers are responsible for protecting participants from harm and that means planning ahead. But this does not make a sex party somehow worse or strip it of all spontaneity. Sex is far superior when communication is at the forefront. 

Besides, accessibility should be the baseline for all events, including sex parties, so that eventually less work needs to be put into pre-planning and more sexy fun can be had. Plus, accessibility isn’t only beneficial for disabled people. Accessibility means ensuring LGBTQIA+ people are safe, that ethnic minority groups are shielded from prejudicial treatment and that everyone is treated equally and fairly. 

Asking people what their access needs are before they attend should be the foundation of your practice. If your sex party is not an accessible one, then it’s not going to be a good one. The ultimate dream is for accessibility to be the foundation in all walks of life but we are a long way off from that happening. So, it is up to the sexually liberal to lead the charge and include us. 

These twisted reactions to what I can only assume was a disabled person’s presence at a sex party is symptomatic of one of society’s greatest sicknesses: ableism. For far too long, being able-bodied, neurotypical and athletic have been the identifiers of what is sexy and “best”. It’s time to lay these attitudes to rest so that everyone can access society’s sexiest places safely. 


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The post Disabled and Sexual: We Don’t Want Ableists at our Sex Parties appeared first on The Unwritten.

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Two years into the pandemic, I’m not sure if I can trust nondisabled people anymore

By Alice Wong / 2022-04-10
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Two years into the pandemic, I’m not sure if I can trust nondisabled people anymore

 

Anna Hamilton

 

As a multiply disabled person, over these last two years I have come to an uncomfortable conclusion: I can’t trust nondisabled people, as a group. 

Like many people in the disability community, I am high-risk according to the Center For Disease Control’s (CDC) list of health conditions that put people at risk for complications or death

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Why I Will No Longer be Sharing my Disabled Trauma for Free

By Melissa Parker / 2022-04-08
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Trauma and lived experience sell. But the disabled can’t make a profit. Nevertheless, there is a particular type of trauma that’s effective. Cookie-cutter trauma: some will cut at your trauma until it bleeds in a palatable, marketable shape.    

Our trauma is, of course, created by the same systems, the same unbroken cogs in the machine. Place your trauma and lived experience in, and what comes out will invariably be a ticket of admission: you can join the non-disabled, entertain them with your tale of woe or inspiration – and they will admit you for a brief period, believe in your humanity, as far as they’ll allow it.    

But once they used up your worth as an educational tool and as a piece of entertainment, your power to make others think they are progressive and inclusive, you’ll be kicked out.   

But don’t worry, it’s all in the name of progress – as much as it ever was.    

I am often asked to work for free – to educate others about my disability or raise awareness about what it’s like to be a disabled woman – to experience emotional manipulation, what it’s like to be groped in the street – it feels like exploitation.    

So does a system designed to tell disabled people that their only worth is sharing their trauma, for free, of course.   

We’re told how to tell our stories: only a sob story, strictly no sob stories, make the worst moments of your life uplifting leave it on a hopeful note – write it cleaner, sharper, how did you feel, why?    

Recently, I was asked to share my lived experience of having a disability with a company. I wondered how much I would be paid for my time. As a disabled freelance journalist, I have to think about the time and effort I put in.

Somedays, I struggle to remember essential words, or I have an unexpected bout of exhaustion. Although the company didn’t expect to have to pay me for my time, “we thought you’d want to help other disabled people get into work and show that other disabled people can work.”   

It’s emotional manipulation, but it also made me think about how many disabled people have been caught in this cycle before and after.

In 2021, the trade union body’s analysis of Labour Force Survey statistics found that non-disabled workers earn 16.5% more per hour than those that meet the definition of disabled under the Equality Act.  

We’re not better off for being complicit in our devaluation. Once I agreed to terms with the company, I was a passionate advocate for disabled people’s rights.   

But a part of being a suitable advocate is also about recognising that I shouldn’t contribute to the idea that disabled people offer their expertise because we have a duty. I’d only be contributing to a system that does not see us as living, breathing human beings but as free content.   

I note two things: that any company that really valued disabled people, our work and inclusion would pay for our expertise, and that the company hasn’t paid me yet.   

It feels like a radical act to suggest that disabled people deserve to be paid for our labour – and our emotional labour – because we’ve been told for generations that our work and contributions to society matter less.    

It’s a non-disabled world, and we’re just trying not to die in it.    

It’s a non-disabled world, and we’re just trying to share an unpalatable truth in it.    

It’s a non-disabled world, and we’re just trying to get a fair wage in it.    

Future generations of disabled people deserve better – we deserve to be paid for time, knowledge and lived experience – we need to say no and work to dismantle systemic imbalances.   

We need to continue to turn these industries upside down – we need to stop trying to earn the respect of the non-disabled if admission on their terms costs us and continues to let them devalue us. 

So, when I am asked to work for free in the future, I won’t. So, we can discuss the importance of education, raising awareness, and exposure, but let’s also discuss why we’re being asked to expose ourselves for free. Why it’s presumed that disabled people don’t have bills to pay, even as that tremendous looming stereotype – the scrounger – the work-shy – the unproductive – is tied to us.    

We need to stop being grateful for inclusion – and start seeing what we bring to the table – a table that otherwise would be content to give us scraps and platitudes.


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The post Why I Will No Longer be Sharing my Disabled Trauma for Free appeared first on The Unwritten.

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How Pressure to Provide a ‘Resolution’ is Impacting Disabled Stories

By Rachel Charlton-Dailey / 2022-04-06
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I can see it non-disabled people’s eyes. The anticipation, the holding of breath, the waiting for a neat conclusion. When I talk about my life, when I describe recent difficulties or periods of pain or illness, they want a story in the traditional sense. They want resolution, a clear narrative arc, a sense of an at least partially happy ending. 

And I give it to them. I find the discomfort and messiness hard to articulate and I want to save them from it, even if I can do no such thing for myself. So, I wrap up things up tidily, perhaps with a comforting smile, and say ‘but things are much better’ or ‘everything is fine now.’

But that’s not my life. 

Chronic illnesses and pain don’t just end conveniently when we want them to. It doesn’t follow a three act structure with a beginning, middle and end, that is so important in Western storytelling. It comes round again and again, with peaks and troughs, improvements and flare-ups. Pain might be gone for weeks, months or even years but that doesn’t necessarily mean a chapter can be closed. 

Of course, all lives are singular and hard to encapsulate neatly but disabled lives and disabled bodies especially belie a narrow, potentially suffocating ideal of what a story looks like. 

As a writer, I know how powerful a clear narrative structure is and how difficult it can be to fit a disabled story into a non-disabled mould. In nature writing, which is where I began my writing journey, publishing has often leaned into the idea of the nature ‘cure’ which doesn’t speak to how I, and many other disabled people, experience nature. 

Sure, I love being in nature when I can be and find aspects of it both soothing and energising. It can help me feel better in some ways, particularly with my anxiety, but activities like hillwalking – which I love – can also make my physical pain worse. In short, it’s complicated and not a straightforward ‘cure’.

Writers like Josie George and Polly Atkin are writing about nature in fantastic, nuanced ways, showcasing how complex and moving writing which takes a different, winding and complicated shape can be. But there are still far too few disabled voices getting published in mainstream literature and I’ve got to wonder if this is partly due to the industry not knowing what to do with our stories or perceiving them as ‘unsellable’, alongside a lack of accessibility. 

This is a problem that goes beyond the writing world, forcing disabled narratives into obscurity and making it harder to tell everyday stories of our lives, with their joys, difficulties and challenges. 

The pre-existing shapes that stories are slotted into do us all a disservice. Whether we are disabled or non-disabled, readers or writers, the shapes of stories are important. Seeing similar patterns to our own, seeing similar experiences represented or finding something relatable in a story should be something that disabled people can do. 

We should be telling our own stories, in all their intricacy, complications and potential for discomfort. And for non-disabled people to never read or hear a disabled story forces us further into invisibility, giving ground to the idea that we don’t exist and therefore don’t need to be listened to or valued, or have our needs met. 

After attending an insightful recent workshop on disabled narratives with Charlotte Heather, founder of The Remote Body which runs writing workshops for disabled and chronically ill people, I was inspired to think further about what shape my story could have. 

Instead of an ‘arc’, I was encouraged to think of it as a circle, or a perforated line, or as a meandering river with tributaries breaking off it – to try out different ways of telling that reflect the way my pain goes up and down without a clear endpoint, and repeats itself cyclically. 

The possibilities are endless, and creatively rich. They’re not only important in terms of amplifying disabled voices, but they are interesting from a craft perspective and have so much to add.

So next time I talk about my pain or my body, I’ll try not to grin and bear it, and make my story fit into non-disabled patterns. 

I’ll try not to make other people comfortable when talking about my own discomfort. I’ll let it be the shape that it is; organic, changeable, hard to figure out. I won’t shut down possible futures by ascribing my own ending.

The post How Pressure to Provide a ‘Resolution’ is Impacting Disabled Stories appeared first on The Unwritten.

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Thanks, but Your Prayers Really Aren’t Necessary

By Brianna Albers / 2022-04-04
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Last Sunday, my dad took me by surprise.

“I don’t have anything planned for today,” he said as he helped me get out of bed.

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Jada Pinkett Smith and ALL Disabled Black Women Deserve Respect

By Shalida A. Askanazi / 2022-03-29
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TW: this article features bullying of black disabled people and disabled people being told they would be better off dead.


By now the whole world has seen the clip of Will Smith slapping Chris Rock at the 2022 Oscars. Chris Rock made a “joke” about Jada Pinkett Smith’s hair loss by referencing the 1997 movie G.I. Jane starring Demi Moore. Demi famously rocked a buzz cut for the role, however, Jada’s haircut isn’t for a movie role.

Jada has alopecia which is an autoimmune disease that attacks your hair follicles, this causes hair loss. 

Many who deal with this disability have experienced different levels of hair loss. Jada came out in 2018 to announce that she was diagnosed with it and with the encouragement of her daughter Willow, she decided shaving her head would be better. 

Hair in the black community is a very important topic. Ironically, Chris Rock made a documentary about the politics of black women and our hair in a film titled “Good Hair” that was released in 2009. 

For centuries black women have been shamed for our hair and how it naturally grows out of our heads. Long hair is often equated to femininity, looking at this from a black woman’s perspective I’m sure Jada felt insecure about the hair loss. But with the help of her family, she was able to see her beauty even with a shaved head. 

Now let’s jump to Sunday’s Oscars. Chris Rock makes an ableist joke about Jada and how she looks like G.I. Jane. The camera pans to Jada and you immediately see the pain and humiliation. 

Black women have always been humiliated for fun, especially in Hollywood, but even more so have disabled black women. Will notices the pain in his wife and swiftly gets on stage and slaps Chris. After sitting back down he tells Chris to keep Jada’s name out of his f*cking mouth. 

As a fellow disabled black woman, I have rarely had people stand up for me. In college as I would travel around campus in my wheelchair and I would repeatedly hear the same white guys scream cripple, as I went past them. 

This made me feel unsafe and reminded me that I was different. Not only was I in a wheelchair but I was one of just a handful of black students on campus. Once I told a guy on an online dating app that I wasn’t interested and he told me I should have died at birth since I was ugly and a disgusting abomination. 

Black women have a long history of not being protected and that’s even more true when you add a disability into the equation.  It’s time that we do start protecting disabled black women and standing up to ableists. If a comedian has to make dated and cruel ableist jokes to be funny, they’re probably not good at their job. It’s 2022 and we should not be the butt of your jokes.

We are human and we have feelings. The abled black community should protect disabled black women just as much as able-bodied women especially since we can’t defend ourselves. 

Black disabled women have enough to deal with, why continuously add more ableism to our lives. I can guarantee you that Chris is fine. 

The real victim in this situation is Jada. 

She had to sit in a room full of her peers while a black man, made fun of her disability for a few laughs. I could see her hurt, the insecurity, and the anger on her face. All that she worked for to gain back that confidence was stepped on by a black man who should have been there to uplift and support her. 

Protecting black women isn’t just a hashtag, it’s something everyone should do. But when you do protect black women please do not leave us disabled black women out of the picture. Not only do we deal with misogyny and racism but we are always exposed to ableism.  

Comedy should never be about a person’s disability. It’s an act of violence, it’s verbal assault, It’s ableism. Being a black disabled woman in this world is already so scary. We’re prone to so much danger. 

Why make ableist jokes a part of the norm. It’s time we change the norm and start respecting and protecting black disabled women.


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The post Jada Pinkett Smith and ALL Disabled Black Women Deserve Respect appeared first on The Unwritten.

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Having a Chronic Illness Adds a Whole Other Layer of Mum Guilt

By Emilie Lawrence / 2022-03-23
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Being chronically ill is exhausting. Add some children into the mix and some (most) days I feel like I am trying to walk through mud, out of spoons before I’m even out of bed. I make bargains with myself all day long; juggling trying to be a good mum with trying to treat my body kindly and not beat myself up when I’m feeling beat up. 

I find that I am always pushing myself just enough to keep them happy, but not so much that I’m left hobbling about, necking painkillers like smarties and I am always trying to figure out how to reconcile the part of me that buys into empowered feminist narratives around self-love, self-care and taking time to heal, with the part of me that has two small people to keep alive.

Because ultimately my body might need to rest, but they don’t. 

A friend recently asked me what it was like having children. It’s the very best, and worst thing I have ever done. I would die for my children, but often I think I might die because of them. 

Parenting is exhausting, demanding, often thankless, relentless – but it’s also so wonderful seeing the world through brand new eyes that find joy in everything. Having a chronic illness and being a parent to two children though, means that my default emotion is guilt. 

Guilt that I can’t run and jump and do the rough and tumble play they love. Guilt that I need time to recover and rest after days out when they just want to continue the fun. Guilt consumes me and then I feel guilty for feeling guilty because the rational part of my brain knows that it is not my fault my body can’t keep up.  

When I was first diagnosed with M.E., a doctor told me that having children would be too much for my body. He said that giving birth, and recovering would be too difficult and his advice would be to not have any. Women don’t need to have children to feel complete. But I do. Women are more than their wombs, we are more than mothers, but having children was something I knew I wanted in the future.

I feel like nothing really prepares you for becoming a parent, especially a disabled one.

I knew I might struggle with being pregnant and giving birth but I just did it anyway. I am a terrible pregnant person; less glowing, and more throwing up until week 22, some of my friends breezed through pregnancy and ended up with thicker hair and bigger boobs; I had such bad heartburn I was bulk ordering American antacids from Amazon and I was so sick throughout that I went into labour weighing less than I did at my booking in appointment. 

With my second child, I also managed to break my coccyx falling down the stairs which added a whole new layer of hell to my pregnancy “journey”, but… My ME symptoms improved?

Talking to other people with M.E. I discovered that this is pretty common. It’s not very clear why, but the hideous muscle pain I usually feel 24/7 just vanished. It kind of made the whole pregnancy thing manageable as I didn’t have the other pain I usually contend with. It was a weird insight into life without M.E.

Becoming a mum is wild. You give birth and suddenly a girl you went to school with but haven’t spoken to in ten years, messages you to say ‘congratulations, I hope you’re breastfeeding??’ Women spend their lives being policed and judged, and having children just provides new and terrifying ways for that to happen. Breastfeeding, screen time, weaning, behaviour, sleeping – oh my god, the sleeping – everyone has an opinion on everything. And so comes more of my old friend, guilt. My children watch too much tv, they know every character on Hey Duggee and can re-enact scenes from Bluey with ease. They eat too much junk and both co-sleep with us. 

At this point as long as neither turns out to be serial killers or Tories, I’ll call it a win and not beat myself up too much but wow, it’s hard. 

The burden of domestic and childcare labour still predominantly falls to women. We still shoulder the brunt of everything and it’s still our careers that take the hit. It is still women who are painted as natural nurturers so that all of the crap we put up with is normalised.

My children are amazing. The best of me and getting to love them is the best thing about my life. But I never feel good enough. I lay in bed at night telling myself that tomorrow I will have more energy, tomorrow I will be a better mum. I will be an Instagram mum who cuts fruit into shapes and does craftsy stuff, but then tomorrow rolls around and my body is screaming at me and I barely manage to be present, let alone perfect. 

I put so much pressure on my husband; I need him to make up the shortfall. I need him to be fun, to play and be everything I can’t be. He has to be good enough for us both and then I feel guilty for expecting so much. I relegate myself to role of miserable moaning mum because that, I can manage. 

I have spent so long feeling inadequate because of my illness, that adding being a shit mum to my list is depressing as hell. I’m not sure what the answer is to be honest, until society recognises how important women are and invests more into better maternity support, postnatal care and high quality childcare; until society stops moving the goalposts of what good parenting looks like and gives us a break; until we stop expecting life to look a certain way.

Last night, though, I was lying in bed with my daughter, stroking her hair and telling her how much I loved her as she fell asleep. She turned to me, and I thought this is going to be one of those beautiful moments that makes it all worthwhile. ‘mummy?’ ‘yes baby?’ 

‘stop breathing so loudly, you’re so annoying.’ 

Lovely. 


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The post Having a Chronic Illness Adds a Whole Other Layer of Mum Guilt appeared first on The Unwritten.

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