Month of Spirits

The past couple days have been hard in regards to my Mom. If you’ve lost someone like a parent, child or spouse you can probably relate. Everyday you’re morning but there are days where it’s harder and it hits you out of nowhere. I can’t say what sparked me last night but I began regretting decisions and blaming myself for things that weren’t my fault; “maybe if I’d not supported her decision she’d still be here kind” of thing.

Today I was reorganizing my email box and came across emails from planning her funeral and emails she’d sent me in the months before her passing like the October trip we were supposed to be on this month.

Maybe that’s why I’m so emotional - we had stuff planned. A trip, a Halloween party, stuff.

Now I’m out watching a tribute band with my Dad and it’s music she enjoyed as well. I’m watching the female guitarist hit these solos and thinking how much she’d love to see this.

I’m sitting here, trying not to cry because I don’t want my Dad or his friend to notice. I’m trapped between our table, the one next to us, and a railing, so if I’m to get up and leave I have to go under the table. No smooth getaway allowed.

I wrote this a few days ago and have decided to go ahead and post it.

That moment you realize there's one last wonton left in the soup and you savor it's goodness ♡ #ItsTheLittleThings

 fucktheevanuris:

ADHD culture is saying “what?” when you heard the question someone asked you but… It didn’t fucking… Register… In the brain? And then you hear the question before they ask again and interrupt them when they’re talking because now you’re An Asshole™ who understands

It’s an odd thing when a parent dies. For one, I never expected this so early in life. I thought I had so many more years with her full of road trips, and phone calls, and marathons of our favorite shows. We had a trip planned out in the fall that she was so happy to have my boyfriend joining us on.

As a disabled adult child I still relied on her for so much … including financially. She covered the cost of my private health insurance since it was through her employer, my cellphone was on her plan, and she’d cover my water bill if I was short on cash. The past few years I’ve been very adamant about managing my health care on my own and I’m so glad I did … but now she’s not there for backup.

Last month I was in a depressive daze. Growing up with untreated depression & anxiety, my mind would be freaking out in a situation like this, lost in a downward spiral with me scratching my arm till it bled. But now my anxiety is being treated and part of me doesn’t know what to do because I’m not spiraling. My depression is still there; a sense of overwhelming dread & inability to act on things, the longing to crawl in a hole and hide from the world.

I made it past her memorial and now I’m forcing myself to begin picking up the pieces. My family is helping me with the estate stuff; my one aunt helped me begin going through her files & my other uncle is helping me with legal stuff. My dad took me to a concert the weekend after the service; a much needed break from the world.

There are days this seems like a bad dream. That I’ll wake up and she’ll be alive; that she’s just at work and I’m waiting to hear her footsteps up the stairs. But they never come.

 the-fit-geek:

Sometimes you just have to bite the bullet and keep moving forward

kipplekipple:

Look, if a person finds out they’re carrying a foetus who may or will be disabled, and they get pressured into aborting, that isn’t freedom of choice.

If that person is pushed towards information that ignores the lived experiences of people with those disabilities, that isn’t freedom of choice.

I am pro-choice. I believe that person should have the choice to abort. But I also believe their choice should be based on accurate, relevant information rather than the ableist bias of our society.

Stop acting like pro-choice ends at allowing abortions. Stop acting like eugenics are fine “because pro-choice.” If you’re pro-choice you need to remember that informed consent is a thing, and to acknowledge that the way abortion is pushed on parents of disabled foetuses is extremely problematic in its current incarnation.

aegipan-omnicorn:

Thank you.

As someone who is congenitally disabled (disabled from birth), I hate having my existence used as club by one side of the “debate” to beat up on the other side.

(I’m pro-choice, too, by the way).

The anti-choice people try to shame me out of my pro-choice position, by saying: If your mother had known ahead of time, and could have aborted, she would have! How do you feel about that?*

The pro-choice people (most of them  – OP excepted), paint my existence as nothing but a punishment and a burden, that anti-choice people are forcing mothers to face.

Both “sides” of this argument are Ableist A.F. Both are hateful and bigoted.

*My answer to that question is two-fold:

a) if she had aborted me, I wouldn’t have any feelings at all, because I wouldn’t exist, but I’d rather not exist at all than to be born to a mother who didn’t want me – especially since disabled children are much more likely to suffer abuse and neglect, and

b) You never knew my mother – decades after her death, I learned she had had a passel of family in the neighborhood where I grew up, and I’d never even heard her mention their names. And looking back on her last encounters with the few cousins I did know about, and how ugly and sour that turned out, I can only conclude that they tried to  pressure her into putting me in an institution (this was in the 1960s). And she wanted to protect me from their ableism.

My mother never saw me as a burden, and how dare you.

semi-sem:

It all honestly dubs down to, this is the MOTHER’S choice, no one else’s not even you as her kid can have an opinion on it.

If a mother wants to abort, then she fucking can, for any goddamn reason.

kipplekipple:

Yes. But if her reason is based on misinformation she was given to her by the society she lives in, then that reason isn’t hers.

coffiend-jackalope:

I’m congenitaly disabled too, and when it was found I would be born disabled the first thing the doc asked was if my mom wanted to abort. This was in 1991. Abortion was the first option they offered and framed as the most humane. Not info on disability resources. They’d pressure expectant parents into aborting. My view on abortion is exactly like @aegipan-omnicorn ’s (and thank you for putting it in words!). I’m pro-choice, even if it were me, but I also know that eugenics plays a heavy role in the abortion debate. Pro-life says “Abortions shouldn’t be allowed because they’re used to kill disabled babies.” and pro-choice says “You’re forcing a disabled baby on parents.”

I’m tired of being used by both sides for their nuance lacking arguments. There’s a lot more to it than just ‘force couple to have disabled child’ 

cookinguptales:

Today is the anniversary of the Capitol Crawl, an event in 1990 in which disabled activists pulled themselves from their wheelchairs and quite literally crawled up the steps of the Capitol Building. This was done to protest the living conditions for disabled people in the United States, and it was done to pass the ADA. And fuck yeah, they did it.

These activists along with hundreds of others managed to secure rights for disabled Americans for decades to come. However, all that heroic work is now being threatened by H.R. 620.

I’ve been talking a lot about H.R. 620 lately because frankly, it scares the shit out of me. It’s a bill that’s designed to strip rights from people with disabilities, and it has already passed the House of Representatives.

A little background:

The Americans with Disabilities Act (ADA) was passed in 1990, the year I was born. Because of that, I have lived under its protections for just about my entire life. When my high school tried to prevent me from graduating because of my medical struggles, we were able to use the ADA to procure a 504 plan. When my dorms and classrooms were inaccessible, it was the ADA that got me accommodations. I am afforded extra assistance when traveling, when voting, at the doctor, and the only reason I can do any of these things is because of the ADA.

I now have a college diploma and a full-time job. I would have neither without the ADA. It’s not a perfect solution, but the protections it does provide have been invaluable in my life and the lives of my family. (My family members with a different disability have also Gone Through Some Shit but that’s really their story to tell.)

I think most of Americans know that some semblance of protections for PWD exist. I’m not sure most Americans understand how difficult they are to use. It’s not like the ADA provides, idk, inspectors who go around looking at buildings to see if they’re accessible. They don’t take complaints from PWD if the elevator in their building stopped working and their landlord won’t fix it. There is no safety & health inspector of the disabled world. The ADA is instead enforced via lawsuit.

To put it simply — if a disabled person has been discriminated against, they have the right to get a lawyer and sue the establishment that has discriminated against them. They cannot sue for damages. They can only get the place to change. (Though some courts have levied additional monetary damages for noncompliance.)

This is already a pretty arduous process. I mean, you have to get a lawyer and go to court. No one enjoys doing that, especially when you know there is no financial reward. But H.R. 620 aims to make this process much, much harder. It requires PWD to gather a ton of evidence and documentation, it requires a system of letter-writing and complaints, just a mess of things that many PWD will not have the time, money, energy, and/or know-how to be able to do.

More importantly, though, H.R. 620 changes how businesses need to comply. H.R. 620 aims to change it so a business or institution has six months before they even need to start showing a plan to change. I repeat. This is not six months before the work is done. This is six months before they even need to start moving. Six months would have been an entire semester when I was in college! And even then, all they need to do is show “progress”. Progress can mean anything! It sure doesn’t mean that I can get in the building!

In effect, this would strip PWD of their ability to actually have the ADA enforced. It puts a very onerous process on the back of the people being discriminated against so they’ll be too confused, tired, or burdened to exercise their rights in the first place. And then, if they get through that wholly unnecessary roadblock, the place they need to get into may not actually become accessible for — well, ever. There is no part of the desired amendments to the ADA that would actually require accessibility. Ever. Which is mind-blowing.

H.R. 620 is popular amongst business conglomerates and real estate developers, for obvious reasons. They don’t want to deal with the extra expenses that come with making their properties accessible. Because of this, they have started a misinformation campaign saying that PWD are using the ADA to attack small businesses with frivolous lawsuits, which puts undue burden on people ~just trying to make it~.

Wow, talking about what “burdens” PWD are. Like that’s not a misconception that leads to self-harm and discrimination every day.

There is no evidence that there is an outbreak of frivolous lawsuits. There are a couple lawyers who have been engaging in fraudulent lawsuits, but frankly, it’s not hard to find an unscrupulous lawyer, and none of them have been successful in court.

Even if there were some uncontrollable outbreak, taking away protections is not the way to deal with this. I can’t imagine this being the reaction to any other group’s civil rights. “Oh, well, some lawyer’s being a dick, better take away civil rights for an entire marginalized group just in case someone tries to abuse it!.” There are so many better ways to deal with misconduct than systematically stripping a marginalized group of its civil liberties.

Again, PWD CANNOT MAKE MONEY FROM THESE LAWSUITS. There is no one sitting in some wheelchair made of gold that they got from taking sandwich shops from cute grandparents who just wanted The American Dream ™. This is a boogeyman that does not exist — but it does play into a lot of nasty stereotypes about disabled people.

It is telling and depressing both that PWD fighting for their right to live with the rest of society is being framed as “frivolous”. So many things that disabled people need are framed as frivolous every day. So many things people insist we don’t really need. This bill would deny us access to stores, hospitals, schools — you know, the things we need to survive. But even if it were just some shop down the road? The ability to live in equality with our peers IS NOT FRIVOLOUS. Our enforced separation from the rest of society has led to a series of abuses against us that can only be rectified if we are allowed to live lives as independently and openly as possible.

The ADA was passed almost thirty years ago. Properties that are not accessible have already had almost thirty years to fix this. Businesses aren’t given thirty years to make sure their fire safety measures are up to code. Restaurants aren’t given thirty years to make sure their health measures are up to code. This is a law that already wasn’t being enforced, and now you act like this is some new issue that’s onerous on property owners? Good lord. Historic buildings were already exempt — what, are y’all just waiting until every building is old enough to be historic? Jesus.

The long and short of it is that the businesses who make money off of our oppression are trying to turn us into the villains of the story so they can pass legislation that will remove their financial responsibilities and take away our civil rights.

H.R. 620 has already passed the House. It moves on to the Senate shortly. Please, please call your senators and tell them that you support the ADA and want them to vote against H.R. 620. So few people are even talking about this issue, but it is a matter of life and death for a lot of people. This, paired with our current administration’s other crimes against the elderly and disabled, is looking to make this country uninhabitable for PWD. And that’s terrifying.

Please help us.

(Note: If you’d like more info on H.R. 620, the ACLU has put out a handy guide on myths and misconceptions about the bill.)