Inaccessible healthcare

Inaccessible healthcare

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What is healthcare?

What is universal healthcare? It can be defined as the notion that healthcare is a human right, that should be accessible regardless of social, economic, or political factors.

If you're not disabled, you may have simply answered access to a doctor, or to a hospital. My experience as a [dis]abled person complicates that question, specifically the concept of accessibility.  I see healthcare as a complex, bureaucratic system of companies, doctors, and all those in between that make my life more difficult, when that is exactly what we pay them to not do -- at least doctors apparently. My healthcare extends beyond basic factors of being able to find a doctor.

I see a doctors appointment as a trial.

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This trial consists of how attentive the doctor is to my needs and experiences. My doctors appointments are not about getting new diagnoses. My appointments are about getting the medication I need to be my best self. In the future, perhaps preventative care, but right now, I'm still in a place of basic need. At least I'm beyond crisis, I guess. 

Where healthcare is not a priority, Americans are faced with the notion that our universal healthcare means you can't be refused from the emergency room in a hospital [unless for an abortion].

Yet, my home city of Baltimore has been exposed for patient dumping. When healthcare providers find out you can't pay, you get minimal care and are released. There's no humanity in that.

In a capitalist society you must work to live and live to work unless you are rich, and/or inherited generational wealth, and/or have institutional power.

With an awesome boss dedicated to making my job as accommodating as necessary, they navigated getting my plan changed, which is why three weeks later I could finally be seen. First, I sought out a dermatologist too whose office would not see me despite calling ahead of time to make sure I would be covered.


I had my first doctor's appointment in almost a year last week, and I'm still fuming.

I got healthcare starting April 1st, exactly three months from starting my current job. My HMO had 5 psychiatrists, one being a woman. The issue was not that she was not a Black woman, but that her specialty was child psychiatry and young children with autism. That is not my experience and she wouldn't be able to help me.

Upon first meeting this Asian female doctor, she asked me what the reason for this visit was. I said to establish care - I hadn't had healthcare in a year, and I was eager to finally get back on medication I had just gotten right before moving around for a few months, unable to get any sort of medicaid.

Strike One

She said that she did not "like medicine" and would refer me to a therapist.

You don't like medicine? What the fuck does that mean? What I hear, is a doctor that will not prescribe me medicine. A doctor that has vowed personally to not make my life easier. Not an alternative apothecary, but someone refusing to do their job and deliberately denying my right to healthcare. A doctor that I paid, and society trusts to be gatekeepers to the ill, to the Disabled especially. A doctor that could not be my primary care doctor because they refuse to listen to me and accept each injustice I have faced on this road to controlling my healthcare.

Strike Two

This 'I don't really like medicine' was quick and offhanded.

She followed with asking how I survived through so much adversity after withdrawal from meds and not being able to take medication or see a therapist.

I said, determination. My partner, friends, family, and mentors.

She responded, 'Like giving me medication?'

I said no, they made sure I was okay and made themselves available to me. Plus, and a boss that understands how important my healthcare was to me and thus how productive I could be. 

This is when I knew she could not be my doctor. She was not listening, and clearly did not seem to be someone interested in providing healthcare.

Strike Three

I had an abscess just before I went to D.C. It flared in D.C. and went away for a few days and now is full blown, as pictured to the right. It wasn't as visibly big a week and some ago, but it felt the same if you touched it. I Showed her this and told her this in a chronic problem I've had since 13. 

These are my armpits left, then right. Can you see the scarring on both from past abscesses? The left one is clearly infected with three bulging areas, and the other is fine. It does not look as huge as I've had them, but it brings a sharp pain - I can barely lift my arm, it's painful to extend my arm, and it's uncomfortable to sit or lay without something holding it up.

She looked at it and said she couldn't see anything. She didn't even bother to touch it, as I said it looked fine but was painful. She told me to put warm compresses on it, the same way any generic google answer will give you. 

For abscesses, I avoid getting medical care as long as possible. My abscesses are large, usually more hard than liquidy, and unlike most people, actually make body parts unbearable to move. But, she didn't care. She said she would get me some referrals and would see me in a year. 

Strike Four

For referrals, this therapist she warned, was a white woman. Therapy is not the end all alternative for my healthcare. Do I believe in it? Sure. Has it worked for me? No. I've had three therapists in from 2016-2017, and never made progress with any of them. I'm not willing to give up on myself, so I'm not willing to give up on therapy. But coupled with the unfiltered opinion about 'not liking medicine', this rubbed me the wrong way. 

 

I was ecstatic about having full health coverage.

Do I have it now?

No, because my healthcare is not accessible to me. I have coverage, but don't have a doctor who knows who I am, who listens to me, or wants to help me reach a manageable standard of health.


$200

That is the average out of pocket price I would need to pay for therapy, a psychologist, or a psychiatrist. My ideal healthcare in my peak time of need was therapy twice a week and psych every three weeks. 


If I had the ~chance~ to be fully in control of my healthcare, I'd imagine that my life would be perfect.

 

When I have my medication everyday life is much easier. Most of all, I can feel happiness, not for a fleeting moment every couple of days when I'm not drained, but for each moment that calls for it. Maybe I wouldn't be in a cycle of consistent pain and immobilization for a completely preventable issue. 

 

Since I was 20, I have considered myself a scholar-activist, meshing critical social theories into fathomable, real life action. Whether through organizing, as I do full-time now, or writing and citing real world examples. However now, I don't read critical theory nearly as much as a used to. Reading critical theory was a hobby, before it was a class requirement for me. I live through action now.

I surround myself with the discourse.tm . What has been historicized is relevant always, but now I find the thoughts and actions of the present to be most applicable and representative of my life right now. Critical theory has acted as an academic space for identities and experiences to be accounted for and made visible. Outside of academia now, I see myself and those like me more than ever. Not in century old texts, or decade old articles, but on Twitter and at events centering us. My critical thought and critique is still there, but no longer as marginalized. I write for Disabled people, though they are not my main audience. I dedicate my time to sharing my story as well as the stories of others, no longer dedicating all of my energy trying to decipher and carve my space. 

This doctor's visit is just one example of what inaccessible healthcare looks like. In this time where everyone feels entitled to preach necessary practices of mental-health wellness, I say shut the fuck up.

1.The way people jokingly say see a therapist or see a psychiatrist -- these are the hurdles you must take to get there. I went to that appointment seeking help, and did I get it? No. Merely, referred to another person. Another trial, as to whether someone wants to do their job and whether their personal opinions will affect my healthcare.   

2. The way people particularly point out that trauma can be processed and you should not show up in it consistently. I understand the sentiment, but that 'healing' is not overnight. Clearly, that healing isn't so cookie cutter or accessible. This is not an oppression olympics, but I feel that as humans, we have truly underestimated the power of trauma, its long lasting effects. The longer I go without my healthcare, medications, therapy, and even preventative care, that trauma stays within me, processing and unprocessed. 

check out my profile:  https://www.disabledwriters.com/profiles/hesna-bokoum?rq=hesna

check out my profile:  https://www.disabledwriters.com/profiles/hesna-bokoum?rq=hesna

I have shared the experience as a testament for those that just blame mental illness for everyone's problems, and that it is easily addressed or curable. There are too many factors, experiences, and identities that cannot get the help sought by our healthcare system. I also know that this isn't just a US thing as well. Mental health is a joke around the world, and universal healthcare is not inherently accessible either. I've studied alternative medicines for my conditions and have done the research necessary to start the processes of investing in them.

I just want to live a fruitful life. And my life so far has proven I can only be in control of my healthcare when it is my only focus full time. When I have no job, responsibilities to other people, and have an almost expendable income. See being Disabled as an identity, identification of this lived experience of bullshit.

We are marginalized through lack of access to the basic things we need to be in control of our life.

We are marginalized through lack of recognition and respect of experience.

#CripTheVote #Healthcare4All 


I must attend the People's Action Transformational Training in July! As some of you know, I intended on going to the traning in D.C., but the costs were too much. This one is closer and more cost efficient. 
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This National Training is for organizers ready to take their leadership to the next level. This training will employ elements of popular education, presentation, and agitation. I am working towards a better future for us all, with a base in the Southside of Chicago. 
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Cost for meals, lodging, training and materials is $850 for People’s Action Member Organizations and $1,200 for all others.

Personally, what the fuck is up?

Personally, what the fuck is up?

A Millennial Politic: When You're Not Graduating

A Millennial Politic: When You're Not Graduating