Taking a Stand

This blog is going to be a little disjointed. I’m going to start with what I wrote initially on my phone after a poor start to an Amtrak ride up from San Diego today. Then I’m going to finish with an amazingly rewarding thing I did.

Part 1

I’m not sure that I will ever get used to being questioned about my disability. This is a fact that makes me really sad. I know I’ve blogged about it many times but that just goes to show you how many times it happens to me. And I don’t even blog about every occurrence. The thing I think people don’t understand is when you’re questioning if I actually have a disability you’re not just questioning the legitimacy of my claim of being disabled, you’re questioning my legitimacy as a human being. You’re saying I am a lazy/dishonest/terrible person because I would make up a disability that I don’t have just to avoid stairs at Disneyland or to sit on the first floor of the train. It’s unfortunate that I have to suffer as a result of there being such horrible people out here that actually would do that. There’s no perfect solution for it, I get that. If you go too far one way and never question anyone then people will abuse it (as is what happened a Disneyland with horrible people from my area hiring disabled people to go with them so they could avoid the lines). If you ask too many people you get into discrimination territory. I just wish people could feel what I feel every time I have to justify myself to a compete stranger and maybe they would rethink their approach or understand just a tiny bit. I’m stuck in between these two worlds. I don’t fully fit in in the disabled community because I don’t have a wheelchair or a cane but I don’t fit in with able bodied people because I have a limp and fall and can’t do things that most able bodied people can.

Sometimes I just want to say “fuck you” to the whole “everyone is going through something
or “people just don’t know any better” thing. Sometimes I just want to stand on top of the globe and shout “hi world, I have muscular dystrophy and you can’t always tell right away so leave me alone!” Maybe I should just start wearing a t shirt that says that all the time. Screw fashion. Sometimes I just want to get a cane just so people get off my back. But I don’t need one and then I would just be helping reinforce the problem of people not understanding that disabilities come in all forms and I refuse to do that.

I know this is something I just need to accept because it’s never going to change but it infuriates me I have to learn to accept something that’s a result of other people’s ignorance. They’re the problem, not my disability.

Part 2

On that note, one of those ignorant people was sitting behind me on the train (on the disabled only level). He had been there since we left the station in San Diego and since he snuck onto the train ahead of everyone else that patiently waited in line. The conductor asked him if he had a disability and he said no. So the conductor asked him nicely to move upstairs. I thought he had until about 3 stops later I heard his phone go off again. It’s one thing when you don’t realize that the 1st floor is for disabled people (despite there being signs everywhere), but it’s a whole different ball game when you do and choose to ignore it. So I turned around, tapped him on the knee and this is how that convo went:

Me: Didn’t the conductor ask you about 3 stops ago to go upstairs because you’re not disabled?

Dude with Bob’s Big Boy Hair: Why, does someone need my seat?

Me: It doesn’t matter. We don’t all the luxury of being able to go up the stairs so that’s really fucked up that you’re still sitting down here.

Dude with Bob’s Big Boy Hair: Well I went upstairs and there weren’t any seats

Me: No you didn’t and look at all these other people standing around not taking up seats because it’s a full train. I am not going to be called out for not having a disability when I do and you’re still sitting down here.

Shortly thereafter, as said dude was packing up his stuff the conductor came along and saw him still sitting there so he promptly got his ignorant butt out of the seat and stood up. I seriously have never felt so invigorated in my life. I really had to pump myself to do it but I didn’t just do it for myself. What got me to finally do it was thinking of everyone who reads this blog, all the new friends I’ve made that have disabilities and how many times they’ve had to face a taken handicapped spot or the like by someone who didn’t really need it. Every time someone just didn’t care that a disabled person needed to use something. Blogging is great but if I can’t take this activism out in the world, then what’s the point? Sitting at home writing about change is great but I need to be that change too. I’ve watched that “What Would You Do?” show so many times, knowing I would probably be the person who was too scared to say something to whoever the wrong-doer was. But today I changed that, and I can feel it. It wasn’t just about standing up for something that wasn’t right, it was about how much I’ve changed and grown as a person. Not only was this guy extremely good looking but I did not do what I did quietly so people were staring at me and were very clearly uncomfortable. But you know what? I didn’t care!! Not at all. For the first time in I think my entire life, I stopped caring what some cute guy or a train full of strangers thought! That guy probably went and told all his friends about the crazy bitch who was in front of him that told him to move and you know what? That’s great! You go right ahead and tell them that. Maybe I am a bitch but if that’s what being a bitch means, I’ll gladly take that title.

I really do hope that my calling him out raised an iota of awareness and maybe he’ll think about not doing that again. If not, that’s sadly just kind of par for the course but at least I said my piece and dammit if I don’t feel amazing after doing it. How have I not been assertive my whole life? Confrontation is totally not that bad! Ok I’m getting ahead of myself but what started as a poopy train ride ended in the most satisfying one I’ve ever taken. And it was all well worth it anyway to be able to spend Mother’s Day weekend with my amazing mom who I was proud to share this story with when I got home.

11 thoughts on “Taking a Stand

  1. I have similar problems at the beach when trying to use the handicapped restroom. Either a surfer is using it to change while having his board with him to secure it, or a homeless person is using it for a place to sleep. Either way I let them both have it for not reading the well posted sign, and not ashamed in the least for pointing it out.

  2. Hi Jackie,
    My name is Alex Robinson and Im one of the OT students. All I gotta say about this post is “Heck yeah!”. You said you felt invigorated after talking to that guy well I felt invigorated after reading this post! EVERYBODY should be doing what you did whether they have a disability or not and this post was a good reminder of that. Thanks for sharing

    1. Hi Alex. Thanks for the extra boost of energy there. I feel even more invigorated after reading your comment 🙂 I hope I can keep the momentum going from my Amtrak assertiveness!

  3. Hi Jackie,
    I’m really sorry you had to encounter a situation like this, but as I went through and read your post all I could do was think about how much I wanted to give you a high five and tell you “you go girl!” (something my mom would tell me if I were to do something like this).
    I am an OT student at Loma Linda, and I must say I have truly enjoyed reading your blog. As OT’s we gain a close relationship with our patients, but of course there are always those “things” they don’t tell us (which is perfectly fine), but I feel that since I have had the opportunity to explore your blog a little, I have gotten to know about who you are, the true you, and it makes me hopeful that I can build that type of relationship with my patients in the future because I believe that will allow me to better assist them in whatever they are going through!
    I have enjoyed reading your blog so much so far, and I’m sure I could spend a few more hours going through more of your postings. I feel you have such a great personality and have the ability to show others going through a hard time that it’s ok to break down and have bad days, but sometimes you have to get up and tell those on the train they just need to get their butt up and move 🙂
    Thank you for allowing me (and many others) to read your blog and get a peek into your life, I feel like I really know you and I’ve never even met you in person!
    Keep up with the positive attitude and don’t ever let anyone define you by your disability!!! Just remember your ability is stronger than your disability!!!
    Ashley 🙂

    1. Hi Ashley. Wow, thank you so much. I actually texted my own mom (and a few others) proudly after I did it 🙂 Everything you just said you got from my blog is exactly what I always hope people get from it so thanks so much for that. I love “your ability is stronger than your disability” too! I’m going to remind myself of that when I’m having those tough days. All the best to you!

  4. Hi Jackie,
    My name is Yasmin Martinez, I am a student at Loma Linda University in the Occupational Therapy Program.
    I am not disabled myself so I don’t know the difficulties that you experience on a daily basis, but it irritates me when I do see someone using, abusing disabled only privileges. I don’t say anything because as is it in your case, someone doesn’t immediately know or can see that they are disabled. I simply know that for myself, I would never use something that is meant for a disabled person. With your train situation, I applaud you for speaking up. That man should have never taken the seat and should have immediately gotten up after the conductor spoke with him. It makes you think that if someone came on the train and actually needed the seat, would he have gotten up and given the seat to that person or play ignorant and remain seated? Unfortunately, sometimes people do play ignorant or simply do not understand. It was not so long ago there was no wheelchair access in public business. In 1990, the Americans with Disabilities Act ( ADA) was passed and ensured the equal treatment and equal access of people with disabilities to employment opportunities and to public accommodations. People still don’t care and take it for granted. I am glad you keep a blog and provide an insight to us who do not have disability and be more conscious and stand up for those who fought so hard to gain the ADA.

    So, again I applaud you.

    1. Thank you Yasmin. I really appreciate that. I think a lot about that, that it wasn’t that long ago that the ADA passed. So many disabled people for so many years weren’t given equal treatment for such a long time. I’m very fortunate it’s been around for most of my lifetime. I’m so glad my blog can help give even an iota of an insight of what some of us with disabilities go through and can give a voice even in a really small way to the community. Thanks again for the feedback!

  5. Hello Jackie,
    I must say, BRAVO! I love the way you approach life and how you don’t hesitate to speak out and stand up for what you believe is right. Sadly, there are a lot of misinformed or uninformed people for that matter that are just oblivious to the fact that there are people that are different in this world. As you mentioned, the disability is not the problem, they are the problem. Thank you for raising awareness of your condition to others and hopefully this can help to lesson the aforementioned problem. Also, glad you enjoyed Mother’s Day and had a great story to tell her!

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