Shit My Ableist Family Members Say: Chronically Misunderstood

After spending Thanksgiving with my extended family, I realized about 95% of my conversations with them included a lot of ableism and me gritting my teeth. There’s some of things they’ve said to me recently:

  1. “I’m so glad you’re better!!!”

My Grandmother told me how happy she was that I was all better at Thanksgiving, when I literally had an endoscopy the day before. About 80% of the time I was at her house I felt like I was being stabbed in the stomach, but my face told another story. Just because I’m good at pretending to be “fine” for your sake, doesn’t mean I’m not screaming in pain.

2. “You’ve learned some great life lessons though”

Yes, I became sick as a child so I could learn a few lessons. One of them is how absolutely insensitive that comment is. Another, is how to restrain myself form decking you in the face.

3. “Do you have a real life now?” or “Are you truly living now?”

Apparently my life wasn’t worth living when I laid in bed sick for months, but dragging my aching body around to school is a meaningful and “real” life.

4. “Sometimes God just answers prayers slowly”

While I am a Christian and believe in God, the idea that one day God is going to magically cure me is ridiculous. Some problems don’t have resolutions, and that expectation leads to devastation.

5. “People who apply for disability are just lazy”

If I wasn’t a minor I definitely would have been on disability, and there’s nothing wrong with that. Also, wow just wow.

6. “I just don’t know how it’s possible that you’re STILL sick!”

Touche

…but it’s called “chronic” illness for a reason.

 

These are just a few of my favorite gems! There’s many, many more and a part two may have to happen soon.

What is the most ridiculous thing people say to you about your chronic illness(es) / disabilities? I’m sure you all have some great stories!

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Why “I’m just not very political” is an Ignorant Statement 

Few phrases get under my skin as much as, “I’m just not very political” does.

First of all, if you don’t care about politics you’re probably incredibly privileged. If it doesn’t matter who’s in power to you, you’re probably not the one getting your rights taken away, or having to fight to have rights in the first place. Even if the majority of politics “aren’t going to effect you” you should still have an ounce of humanity in you to care about other people, and how politics might affect their lives.

Most people don’t get the choice to not be involved in politics. They have to fight for basic human rights and to continue to have the right’s they’ve already been given. Being complacent isn’t an option. Minorities having been fighting the same fight for hundreds of years, and know that they can’t back down even when they’re tired or its inconvenient.

“I’m not just that political” is such a cop-out statement. As if not caring about politics excludes you from having to care and making decisions that effect other people’s lives. For example, I know a lot of people who refused to vote in the last election because they didn’t like Trump or Hillary. Choosing not to vote does not mean that you aren’t responsible for the outcome. Voting is your civic duty, and if you are able to vote and chose not to, then you are part of the problem.

Many people who claim they “aren’t very political” seem to feel a sense of moral high ground, as if caring about politics is wrong or stupid. I think not caring about politics is wrong and stupid. Attempting to exclude yourself from politics, does not make you a better or more mature person. I would actually argue that it’s incredibly immature to not participate in politics. Hard decisions have to be made, rather you like the candidates or not, and is the last election it should not have been a hard decision. No matter what country you are a citizen of, you should always be actively trying to make it a better place. If you are lucky enough to live in a democracy, then you ought to play a part in politics, and put your ballot where your mouth is. Also, if you chose not to vote, you have no right to complain about politics. You had a chance to better our country, and instead you sat idly by being complacent.

Everyone should vote.

Everyone should care about politics.

Everyone should want to move forward and better our country.

Trumps Latest Attack on Trans Rights

I would like to say I was surprised to wake up yesterday morning and find the tweets about banning trans people from the military, but honestly nothing he does shocks me anymore.

This however did seem out of the blue to me. No conversation, only a declaration. While technically nothing is set in stone or law yet, even stating these kinds of hatful things is harmful. This is the slow way to eventually ban trans people from existing. If they can’t go to the bathroom and can’t in the military, where can trans people exist then?

I wouldn’t say that I personally support the military in all of its endeavors, but being pro-military or not isn’t what this is about. Your gender shouldn’t determine what you can and can’t do or what you can and can’t be in life. If your willing to put your life on the line, you should be welcomed with open arms and allowed to live an authentic life.

Trump claims trans people are a “burden” due to their medical costs. The US military has quite the track record of not taking care of their veterans, or active duty member for that matter when it comes to health care of any kind. Not to mention not all trans people medically transition, and you shouldn’t assume they will or want to.

There are also over 15,000 trans people currently serving in our military. What’s going to happen to them? He acts like he’s stopping trans people from joining the armed forces, but no trans people are already serving.  You cannot end sometimes career because of their gender identity. Are you going to discharge them like they did back when “don’t ask don’t tell” was a law? We’re going backwards on the progress we’ve made.

I believe this is just the beginning of an attack on the LGBTQIA+ community. He’s gone after trans people multiple times now, and it isn’t going to stop unless there is enough backlash. Even then it may not end. Gaby Dunn made a video about this, and she believes that Trump is going after trans people first, because they don’t always get the support that other members of the LGBTQIA+ members receive. I completely agree, and since that’s probably true everyone in the community, and everyone who is a decent human being, should show up and support trans people.

The LGBTQIA+ community is resilient and we will not let him get away with this.

Queer-Baiting and Representation

We’ve all been there, a “hit television show” brings in a queer character or reveals one of their characters is queer and we start binge watching the show solely for the LGBTQIA+ representation.

All too often the characters are either killed, written out of the show, or declare being queer a phase and “go back” to dating the opposite sex as if bisexuality isn’t a thing. Most recently the shows that have made headlines for doing this are The 100 and Supergirl. These are two examples of blatant queer-baiting, but many shows queer-bait in a less obvious way. They make two girls/guys have a flirty relationship that’s implied but not explicitly stated, then once the ratings go up from queer people flocking to the little representation we have, they kill one of them off. TV shows shouldn’t be using the LGBTQIA+ community for views only to get rid of the queer characters the first chance they get.

While we have way more representation now then we did even three or four years ago, a lot of it still has problems. I’d like to see LGBT people in healthy relationships just living life every once in a while. Maybe that isn’t “good TV” but it’d be nice to see. It seems like big problems arise in most characters situations or sexuality is the premise of their character. Why can’t they be gay without it being a big deal or being one big stereotype?

The killing of LGBT characters specifically queer women is what’s most alarming to me. It happens so often that it isn’t a coincidence at this point. I feel that it sends a very clear message that Hollywood does not value LGBT lives or at least sees them as expendable. Some people may think that conclusion is dramatic, but these repetitive actions seem very straightforward. LGBT lives are disposable and unworthy; They are deserving of physical harm, death, or to be cast aside when Hollywood is done using them. Sending these messages is incredibly dangerous to the community, specifically young people who are looking for guidance and an image of what their future may be like.

Most representation is good, but accurate and diverse representation in more important. I’m happy to see more LGBTQ+ characters on TV and in films, but I’d like to see more diverse stories. The tale of a cis-white-middle class gay person isn’t the narrative of many people in the Queer community or even most. There also isn’t a lot of representation for non-binary, intersex, or asexual people. What’s up with that?

I think we should be a little more picky about the TV shows we choose to support. We shouldn’t just accept any representation, but rather demand the diverse and accurate representation we deserve!

– Alyssa

It Could Be Worse

I hate this saying.

I see it a lot from abled-bodied people in response to those who are disabled/ chronically ill. It’s also something I struggle with internally. I tell myself that I shouldn’t complain or voice my experience because there are people who are more sick than I am or have a harder situation in life. Being undiagnosed I tell myself ” at least it isn’t _, I have it a lot better than them and should be more grateful!”

Yes it could be worse, it could always be worse. No one has had the end all be all of terrible situations; even when life sucks, it could suck even more. This statement only invalidates others struggles. How is telling someone that their situation could be worse going to help them?

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While I do have periods of time where I find it hard to bear and I begin to wallow in my own struggles, they are few and far between. Some level of depression or just general unhappiness comes with the territory of chronic illness. For some it’s all the time and for others it’s episodic, but even the most positive people have times where it all feels like too much.  In the times where it feels like life couldn’t be worse hearing that it could be isn’t going to help. Life isn’t a competition especially when it comes to hardships. Who wants to win for losing?

I can see why some people might think this is supposed to be uplifting and positive. While staying positive is a good thing when going through something difficult, telling someone “it could be worse so get over it” only silences them. Disabled and chronically ill people are already a people group who get silenced all the time or just left out of the conversation all together. There are so many things you could say to be helpful instead. For example….

  1. Is there anything I can do to help?
  2. I will pray for you (only if the person is religious/ is okay with you offering prayer) or sends positive thoughts
  3. That must be really hard, if you need someone to talk to, I’m always here.

Most of the time when people are going through something challenging they need someone to talk to or someone to sympathize with them. Very rarely is a reality check going to be a good option; chances are they understand the reality of their situation a lot better than you do. Also going through something tough and having someone else tell you all the ways it could be worse  only leads to the you thinking about how other things could go wrong.

Even if you don’t understand someones situation try to be sympathetic. There are a lot of things in life I will never be able to understand due to my privilege:  being white, middle class, living in America, but that doesn’t mean I can’t sympathize will people who are struggling with something different than I am. No two situations will ever be same, so let’s build each other up and be there for one another instead of invalidating others experiences.

Lots of Love,

Alyssa

 

Being on Your Own Timeline

In the U.S. and especially in the suburbs there’s a pattern to life that your assumed to follow.

Graduate high school, go straight away to a University, graduate college in four years, get your first job, get married, have kids, etc.

I was raised to believe this is the only way to be successful in life, but after having my life interrupted by chronic illness and having to pave a different path for myself I’ve learned just how wrong that is. Everyone does things at their own pace; some people aren’t mature enough to go to college straight out of high school or can’t financially make ends meet so they have to work before going to school. For other people college just isn’t the right choice for them, or they choose to go back to school later in life.

While I am definitely pro-education and believe, given the opportunity, you should obtain as much education as possible, I can see that there are situations that can make that difficult or near impossible. You don’t have to have life figured out at 22, or even your own life figured out.

While there’s always going to be a lot of external pressure to follow a certain timeline, only you can know what’s best for yourself. Right now it’s best for me to be out of high school while I pursue my GED and get my health on track, to other people the decisions I’ve made may not be what they think is right, but I don’t believe you can speak to experiences you haven’t had.

Every time I meet someone new there’s always a million questions about school and extra curricular’s. I don’t feel the need to tell my sob story to everyone I meet so I often tell them the town I live in and let them make their own assumptions. Occasionally I’ll tell people the things I used to do when I was in school without mentioning I don’t go there anymore, but that’s normally when I’m uncomfortable with all the questions and feel like I’m being judged.

It’s crazy how narrow minded people can be. I try to put myself in other peoples shoes and examine situations from all aspects the best that I can. There isn’t one correct way to live life and I think this plan we’ve created as a society and seem to believe everyone should follow to a T can be really detrimental. You’re not a failure if your life doesn’t look like the majority of your peers, friends, or family members. You also don’t have to have the same dreams and goals as everyone around you.

Be yourself and do things on your own timeline!

Alyssa

Why do we have to fight this stuff?

The laws Obama put in place to protect transgender kids were abolished yesterday.

It makes me so sad that we have to fight for trans people to use the restroom the corresponds with their gender. These laws were made to protect trans students, and the White House sent a very clear message that they are okay with putting these students lives in danger, because they don’t support trans rights. This is beyond ridiculous.

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These are the same people who make fun of safe spaces, and this is exactly why we need safe spaces! Kids shouldn’t be forced to use the wrong bathroom at school or to go by the wrong pronouns. They shouldn’t be afraid to change in the locker room or scared they might get attacked by a classmate. Abolishing these laws tells bullies what they’re doing is acceptable. 41% of transgender people will attempt to commit suicide in their lifetime; bullying and intolerance play a huge role in that statistic. Those statistics are even higher for ethnic minorities, those in poverty, and people who don’t finish high school.

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These kids need protection and love when going through the already difficult experience of middle school and high school. Why are we letting our government out an even bigger target on their back? When I was still going to high school there was a guy I knew who was trans and had gone to elementary school with me. I only knew he was trans because the news spread like wildfire. Everything from supportive comments to transphobic slurs filled the halls. For reference I went to a HUGE school, so it seemed weird that anyone cared, but this is Texas after all. Luckily my school let him use the boys locker room and bathroom, but people weren’t always very nice and he had to deal with the gossip and being misgendered daily.

I don’t have any great advice or solution to the issue, besides telling transphobic people to get their heads out of their asses, but I don’t think that’ll help. Continuing to support organizations that fight for LGBTQ+ rights like the Trevor Project, GLSEN, Trans Lifeline, and The Human Right’s Campaign is important. If you have someone who is transgender in your life let them know how much you love and support them. If you are trans know this cis gay girl may not be able to understand your struggles, but she loves you and supports you 100%!

Lots of Love,

Alyssa