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"Can you walk down eight steps?#Disabled #SpinaBifida #Ableism #Halsey #HandicappedParking

This past weekend - Friday June 24th - I got to see Halsey at the Shoreline with my two best friends. To be clear, Halsey was AMAZING! But the venue was shitty...

I was prepared. I brought my handicapped placard and researched the venue before going. I purchased tickets online that said handicapped accessible tickets with a companion so I got the seat with a handicap and companion seat and also the seat next to the companion - three tickets in total. A week before the concert I checked again to be sure there was handicap parking and indeed it said handicapped parking available.

The day of the concert we got to the venue, and parking was a mess. We asked eight parking attendents where handicapped parking was, and they just pointed - and didn’t say anything. We finally parked but it wasn’t handicapped parking. The parking lot was uneven and gravely and not paved, which is kinda difficult when you're in a wheelchair. We got out of the car to assemble my wheelchair.

We had to walk a little ways to get to the venue. On our way over, we saw the parking lot where all the handicapped parking was. Austin asked one of the staff members if we could park there and she said yes just ask one of the shuttles to shuttle you back to your car and put his hazard lights on. But, once Austin got his car but yet another staff member said he couldn’t park there, and made him go back to his original parking spot. It was confusing and disorganized, as if people at Shoreline aren’t used to disabled people coming to concerts with their friends at all.

If people get treated like I did, that’s kind of not surprising.

We got to the venue and they wanted to do a bag check - including looking at the bag where I carried my catheters. It seemed like too much of an invasion of privacy, so I left the bag in the car… It turned out that the bathrooms (porta-potties) weren’t wheelchair accessible anyway… even though they were supposed to be.

We got to the gate to scan our tickets. I asked where the accessible section was. They just pointed and said on the other side of the theater. It turned out that the seats we had that were supposedly handicap accessible …weren’t. My friends Austin and Brooke talked to one of the staff and told them the situation. The staff member looked obviously irritated, pulled all three of us aside and radioed her supervisor. Austin was still talking to the staff member still telling her the situation and then she made a finger gesture telling him to be quiet.

Her supervisor came and after hearing the details, she looked at me and asked, “Can you walk down eight steps?” I said no. Then she asked “What if one of your friends carried you down?”

I …couldn’t even believe they asked me that. I was born with a birth defect. I have spina bifida. My spine was formed outside the skin, and my nerves weren’t formed in my legs. Right after I was born, doctors had to put my spine back into my body. I can’t feel below my knees, so I'm paraplegic. I don’t expect strangers to know my whole history but… I was in a wheelchair and I bought handicap accessible tickets. Why was she asking me that?

I turned and looked at Austin and Brooke and I just shook my head.

The staff lady rolled her eyes and sighed. Then she said, “Let me see what I can do.

Eventually we got to our seats, and they were accessible, but they were segregated off in the corner.

And I don’t know how I feel - maybe disappointed? It's a RARE moment when I’m feeling really good about navigating as a disabled person in public spaces. It is also RARE to get to hang out with my best friends. I go to dialysis three times a week, and right now I don’t work, so the tickets were an expensive treat. Most of the time I’m feeling tired and sh*tty, but on Friday, I felt good - it was going to be a good night.

And Shoreline ruined it.

…But Halsey was AMAZING!

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Disabled Parking Spaces and Ableism

December 1st, 2020

My experience with Domino’s Pizza, ableism and manipulation.
I arrived at my residence on November 21st, 2020 to find a Domino’s Pizza employee illegally parked in my assigned disabled parking space, which has my unit number on the sign. I told the Domino’s employee he was illegally parked and needed to move his vehicle. The rude, disrespectful and entitled Domino’s Pizza employee told me, I needed to wait. I told him, I would be calling the police. The Domino’s Pizza employee stormed off the porch of the tenant he was delivering to, recklessly backed into my vehicle and drove off.

Police and a courtesy patrol took statements and pictures of the damage to my vehicle. Several Domino’s Pizza locations in our area were called. I called Domino’s Pizza corporate who stated the 71st and Memorial location is assigned to my complex. The location is independently owned, I was told a member of management would call me. I went to the location Monday, November 30th, 2020. I allowed a staff member to have a copy of the Domino’s Pizza employee’s vehicle. He claimed that employee had to work at another location. I left my contact information. I received a call from someone claiming Domino’s Pizza employees are responsible for any damage they do, that it would be between me and the police to go after the employee for damages. He then asked what happened. I told him, he already made his alleged claim regarding liability and he could obtain a copy of the police report.
Domino’s Pizza is full of ableism and manipulation. They do not take responsibility for hiring individuals that drive reckless. Domino’s Pizza needs to be accountable. I will take Domino’s Pizza to small claims court. I requested the contact information to their legal department and never received it. Stop parking in parking spaces designated for individuals that are disabled.

Domino’s Pizza
7201 South Memorial Drive
Tulsa Oklahoma 74133

Domino’s Pizza
2222 East 61st Street
Tulsa Oklahoma 74136

Domino’s Pizza
2828 East 91st Street F
Tulsa Oklahoma 74137

Domino’s Pizza
8611 South Lewis Ave.
Tulsa Oklahoma 74137

Domino’s Pizza Corporate
30 Frank Lloyd Wright Drive
(734) 930-3030

#Disability #HandicappedParking #Ableism #Discrimination #DisabilityRights #accountability #Fibromyalgia #HashimotosThyroiditis #Spoonie #ChronicIllness #ChronicPain #Depression #Anxiety #PTSD #Asthma


SNAP - Sorry you've been fighting for SSD 5 years; No food

SNAP has some new rules thanks to Trump. Even though I'm extremely disabled with multiple rare and serious conditions, according TO SNAP now you're not disabled unless you get SSD or SSDI. Doesn't matter about anything else. They don't care that you're disabled, they don't consider you to be even though every other area of government does and every doctor does. So apparently the 9,000 who died last year waiting for social security had it easy because this year they get to die and starve. Still fighting in court and I'm beside myself. They took away part of the benefit I was receiving because of this. I'm in Monroe County, New York State. It's insanity. It's pure discrimination and absolutely disgusting. #Disability #HandicappedParking #Anxiety #Depression #CPTSD #PTSD #Fibromyalgia #ComplexUnspecifiedNeuromuscularDisease #LiverDisease #Migraine #Pain #ChronicPain #LGBTQ #Asthma #Allergies

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You think I’m fine because I look fine on the outside

I just recently started a new YouTube account to make videos to help raise awareness about Chronic pain and chronic Mental and Physical https://Illnesses.As well as trying to push back against this “Opiod Epidemic “. I am raising awareness for many Chronic Pain patients who are being mistreated. In 2018 I survived a suicide attempt because I felt like I couldn’t keep living in pain like this after my pain Drs took me off my medications. I was struggling with memory loss and uncontrollable impulses. I feel like my calling or the reason I survived was to help raise awareness and educate the masses about mental illnesses and trying to deplete the stigma .If you would like to check out my YouTube channel I would sincerely appreciate it . Search for Chronic Pain Warrior 4 You . Let’s help unite strangers and families with understanding and love. I hope the more that my videos are viewed the more people can feel like they aren’t alone in this https://battle.And for those of us who are fighting invisible illness like I am the frustration of trying to prove you are not making this up and it is not “all in your head” I believe you . Keep advocating for yourself! I want to help you find the strength within you to not only survive but to strive . All my love .#Chronicpainwarrior #fibrowarrior #Spoonies #fightingtheopioidepedemic #ChronicPain #depressionhurts #Depression #MentalHealthAwareness #Anxiety #PTSD #HandicappedParking

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“Oh cool! You *get* handicap parking because of him?”

Thanks to the Valentine’s holiday, our school’s parking lot was much busier than usual for pick-up. The handicap spaces were taken, so I parked our swagger wagon with the other cars next to curb, making sure I left enough space to be able to load up the adaptive stroller, trilogy, walker, etc.
“Wow! It’s busy! Even the handicap spots are full today.” (Me, making awkward small talk.. as moms do.)
“That’s so cool that you GET handicap parking *because* of him.” (Other mom... probably also feeling awkward.)
While my brain registered the shock followed by passionate and witty responses that never made it to my mouth- I heard my voice explaining that it’s not for me. “It’s FOR [not because of] my son, who can’t walk far.. and sometimes can’t walk at all. It’s because he has so much equipment. He uses oxygen and needs a machine to breathe if he sleeps. It’s because his doctor thought it was help...” the explanations went on. I know I didn’t have to justify the parking situation, but I felt compelled to. For some reason I also felt compelled to add that we park far away when there’s enough space if we are using the stroller. Was I angry that this mom thought having a child with disabilities came with perks? Or maybe I felt guilty- because I don’t have a disability, and I’m the driver? I don’t know... but I do know that being able to park closer is *for* my child. It’s not a perk. I’ve never felt personally “lucky” using it, or lugging around a van full of equipment to go anywhere. I’d rather park in the back and have my children hold my hands as we skip on the concrete towards the far away store, but that’s not how we roll... and that’s okay. I’m grateful for my children and I love them more than anything. I’m lucky to have them and be their mother. *They* are perks. Parking isn’t. Having multiple therapies a week isn’t. Spending hours on the phone, emailing, scheduling, etc. isn’t. Hospital visits aren’t. Medications aren’t. Non-invasive ventilation is certainly not a perk. No sleep=not a perk. Equipment all over the house isn’t a perk either. Watching my child cry because his legs don’t work... you guessed it. Not a perk. We “get” a lot of extra stuff FOR our child... and most of it isn’t anything to be jealous of. 100% be jealous of my amazing beautiful children- I don’t blame you. I’m a lucky mom and blessed human being. But please- don’t assume I’m using my child’s disability to avoid walking 30 extra feet, or enjoying the parking perks. Thanks. #specialneedsmom #HandicappedParking #RareDisease #Hypotonia #PeriodicParalysis #AirwayDisorder #MobilityAids

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#frustrated why is it that people Park in the handicap parking when they ain't handicap

some of them feel like cause they got babies or dey only going to be a few minutes or just cuz deyfeel like it 😭


A Letter From a Parent whose Child Has a Disability

This has been mulling on my heart for awhile, so I thought I would pose this to all the parents out there.

Imagine you are taking your child to the park or movie theater or someplace special. Your child is so excited to go and has been anticipating this for awhile, but when you get there there is no safe space for your car to park so you can get your child out safely. Most people in the parking spaces are not even getting out of their cars, they are just sitting on their phone. You ask if they can move so you can take your child in but you are sneered at, insulted, and even told “I’m not parking.” Some even make snide remarks towards your child. You leave to go home and your child cries.

Imagine this scenario happening everywhere you go, even at your child’s school which is supposed to be a safe place for your child. Either without a tag, with an expired tag, or using someone else’s tag. Handicapped spaces being used “just for a minute” or used just because they think they have a right means that people who need those spaces don’t have a safe place to get their child out of the car. I’ve honestly been shocked and appalled by some of the attitudes I’ve encountered. When you say something parents are saying “I’m not parking” or getting nasty or acting like you have the right to be there unless the cop is there monitoring those spaces. Imagine the example you are setting for your child in how they may treat their peers with disabilities. Especially when your child has a disability that hinders their ability to walk or like my child who uses a wheelchair the only safe place is a handicapped space and we are often cut off by those who are not using those spaces appropriately. I’ve noticed that no one takes the “reserved for ____ family spaces” at schools but the handicapped spaces are used all the time for parking, drop off, running your child’s lunch in, etc and then we are stuck waiting for the space to open up and then end up being late to school or blocked from attending somewhere. 

When you have a child with a disability or you are an adult with a disability, often your only options for accessing places are the 1-3 handicapped spaces available. Those with wheelchair vans often have only one choice and that is the “wheelchair van accessible” spaces and sometimes there is only one of those. Often times those spaces are blocked by regular cars or by people sitting on their phones. At school regular parents have multiple options for getting their kids to school they can use the kiss and go line, they can park and walk in. Other places there are multiple parking options for those without disabilities. We have one option. You shouldn't need police there monitoring handicapped spaces or cones blocking them from being used during school pickup. You should be able to just do the right thing and leave those spaces for those who need them. 

  #Mamabear   #HandicappedParking  #InclusionAndSpecialNeeds

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In Limbo....

Today I woke up feeling a bit conflicted and in limbo. Why do you ask?! Well it's kinda hard being in my shoes as a person with invisible diseases and disabilities. The able bodied people treat me differently due to my health challenges and disabilities. I feel some times that my able bodied friends have pity on me and want to limit their interaction, which can be hurtful and insulting at times. Yet the disabled community treat me differently because maybe I'm not disabled enough. No matter how you look at it, everything and everyone in the world is put into category. Everyone has a place or class in this world. I've had the elderly disabled literally curse me for having a walker and handicap placard. The dirty looks I receive some times truly shocks me that I get from the elderly. I was raised by my grandmother and she always told me to respect my elders no matter what, yet is it ok to be and feel disrespected by the elderly?! I'm in limbo...With the people that are similar to me in age or disability, I even get or feel judged. I've been told "Oh, your illnesses is nothing compared to mines." Seriously, who wants to compete or even compare on who is more disabled?! I wish I could make this up yet I've truly have had these experiences. So what do I do?! I guess figuring out my place in this crazy, algorithmic world... I'm sit in limbo and figure it out... eventually... right?! Who knows! #EhlersDanlosSyndrome #HandicappedParking #MobilityAids #PosturalOrthostaticTachycardiaSyndrome #InvisibleDisability #LifeofanEDSerwomanofcolor


Special Treatment when “you don’t look sick” #InvisibleDisability #ButYouDontLookSick #HandicappedParking #Dmv

So I am at the DMV today... renewing my handicap pass. I have my walker and I was just accused by another person in line that I probably went home and came back after I saw the long line wrapping the building and I am pretending because I don’t look sick.... I just started laughing I had no idea how to respond.