Tag Archives: Disabled

Pride and Chronic Pain

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July is Disability Pride Month in honor of the passage of the Americans with Disabilities Act on July 26th 1990. Any and all events held in honor of it vary by city and country, but it’s also a time for people to share their experiences of disability on social media. There is also a flag associated with disability pride.

By Ann Magill – Disability Pride Flag [ID – Dark gray rectangle with diagonal stripes in a soft green, light blue, white, yellow, and red.]

Much like it is for LGBTQ pride, there are a lot of different experiences under the disability banner. Whether your disability is physical or mental, visible or not, curable or not, and so forth; people have different reasons to feel or not feel pride in their disability.

For people who are born with disabilities, it can be an intrinsic part of who they are from the moment they begin to perceive the world. There isn’t a desire to cure themselves to be like other people. They love themselves and their disability because it is no less a part of them than their hands and feet.

For others, disability was thrust on them through incidents such as an accident or sudden illness. Some want to pursue a cure to end their suffering and to return to how things were before, and some will. Others have to accept their life has been changed forever and cannot feel anything good in regards to their disability. They can still find pride in how they persevered and changed for the better despite their disability.

It’s important to never forget that two people can have the same exact disabilities, but have experiences and feelings toward their conditions that wildly differ. So it’s important to also know you can’t just assume what kind of pride they feel in their disabled life. There are also more complicated feelings than just what’s listed here.

I have shared both these experiences of being born with and coming into disability. I was born with Autism and ADHD. I was diagnosed with asthma at age 1 and migraines as a teen. I experienced disability all my life, even though I didn’t know I was neurodivergent until about age 30, which is also when I started to be diagnosed with different types of new disabilities.

I would take a cure for asthma and migraines in an instant. However, my autism and ADHD are a different story. I could do without the executive dysfunction, but at the same time, it is core to who I am. I wouldn’t be the same person without it. There are things in my life that I am proud of and part of those achievements had a lot to do with who I am because of Autism and ADHD. It did cause difficulties too, but everyone has difficulties. I just needed to know what I was dealing  with to better be able to overcome some problems and cope with others.

Now, later in life I have become physically disabled to the point I cannot work. I am in pain every day of my life from fibromyalgia and a herniated disk. I also have difficulty walking and experience increased pain due to foot and knee problems too. Like my asthma and migraines, I would love to do away with these things. But I can’t, so all I can do is just persevere and adapt. Which, in turn, has fundamentally changed me as a person.

You can’t have chronic pain and not change on some level. Things you used to do easily become impossible. Dreams you had become out of reach. Everything has to suddenly revolve around your ever present pain. It slows you down, makes it hard to keep up with others. It makes you bitter for all the times you were having a good time but then pain got in the way. Sleeping is never the same and if you’re able to hold on to a job, it’s exhausting beyond belief. The only pride I can take in Chronic Pain is that I won’t let it stop me from seeing my niece and nephew grow up. There are other things I live for too, and take pride in all the things I am still able to hold on to.

These conflicting feelings don’t invalidate each other; nor do the different experiences. As a non-disabled person, you don’t have to completely understand our feelings and experiences, just at least respect what we say. As I said previously, people with the exact same disability have different and even contradictory feelings about their condition. We are not a monolith.

Furthermore, I don’t want people to look at me like I’m some sort of inspiration. I just want people to understand that telling me you would kill yourself if you were in my situation is not the compliment you think it is.

Handicapped Halloween: How to Make the Holiday Fun for Everyone.

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Halloween is hands down my favorite holiday, taking place in the best season of the year. Everything about autumn makes me smile, but nothing more so than Halloween. Candy, horror, and costumes. What more could you want? So, with Halloween just a week away, I wanted to address this holiday through a disability lens.

Last Year’s Jack O’Lantern – [ID: Carved pumpkin in shape of a ghost and a traditional Jack O’Lantern in the bacground]

I’m 37, so I have celebrated Halloween every which way. I’ve done my share of trick or treating, hit the parties in my 20s, and even visited Salem a few years ago. More recently, I have returned to the joy of trick or treating by giving out candy. I also walked the block with my young niece and nephew last year. They were dressed as a bee and beekeeper respectively, and myself as a plague doctor.

Halloween in general is a lot less stressful than Thanksgiving or Christmas, and costs way less. This aspect makes it easy for many people to participate, and yet, there are some blind spots. A holiday that is all about candy is going to alienate kids who have food allergies or severe illness that prevents candy completely. Many people can enjoy a party, but if there is a strobe light on for a spooky effect, then anyone with epilepsy won’t be able to come.

It’s really hard to address these issues if you’re not aware of them. It’s also one thing to have a strobe light at a party when you have confirmed no one has any issue with it. However, if you put a strobe on your porch where trick or treaters of all kinds will see it, you cannot guarantee someone with epilepsy won’t walk by and have a seizure.

The following is a list of things to consider for your fellow disabled trick or treaters and party goers, along with any helpful suggestions. Not everything on the list may apply to your celebrations, but I ask you to go through the list and consider incorporating what you can so everyone can enjoy this wonderful holiday.

1. We are still in a pandemic, so it is still a good idea to incorporate a mask into your costume. This especially goes for indoor parties where the virus spreads so easily. At the very least, please get the new bivalent vaccine booster to help protect not just yourself, but your family, friends and neighbors too.

2. If food is offered at a party, try to have a variety of safe food options for any food-sensitive guests. This is not just allergies, some people can have triggers outside common allergies. If possible, find out if there are any particular food requests. If you can’t meet specific food restrictions, do at least go for the most common allergies, such as dairy, eggs, and nuts. When it comes to allergen-friendly candy, try to include simple sugar-based sweets like Dots, Sour Patch Kids, Smarties, Skittles, Starburst, Swedish Fish, and Nerds. For kids who are severely restricted, consider participating in the Teal Pumpkin Project and hand out mini toys.

3. If you’re having themed alcoholic drinks, make sure there are alcohol-free versions. Many disabled people have conditions or medications that restrict alcohol consumption. It’s a good rule of thumb, so designated drivers don’t have to miss out on having fun drinks too. Also, make sure you always have plenty of water available.

4. Halloween lighting is always a must, but as mentioned above, please don’t use strobe lighting, it can induce seizures for some people. Flickering lights at a low frequency are safe, but anything with fast flashing and super bright light is a big no.

5. If you want to make a black cake in the spirit of Halloween, do not use activated charcoal. This ingredient is used when people have overdosed on pills to absorb the medication. That means if someone is on important medication, it will neutralize it. There are other black food color options, like squid ink. Grapefruit can also neutralize medicine, so avoid it in drinks too.

6. Make sure there is plenty of seating at your party or event and your physically disabled friends will be very appreciative.

7. Consider the volume of the music. First, you may have guests with hearing loss and sensory overload who find it extremely difficult to communicate with music that’s too loud. Second, it’s also nice for your neighbors who could also be disabled and want to enjoy Halloween in peace.

8. If you are renting a venue for the party, try to pick one that is handicapped accessible. Despite the ADA, there are still lots of buildings designed without disabled people in mind. Definitely consult your disabled guests on what they need. They may already know how well a venue accommodates their disability.

9. Unless you’re running a haunted house, I strongly suggest no jump scares. People with PTSD or other medical issues should be able to enjoy this holiday too, without having it ruined by an unnecessary panic attack. If you feature some kind of scare for trick or treaters, it should be opt in and not terrify people walking by on the street.

10. When I was a kid, there was a lot more climbing stairs and knocking on doors. These days, most people go outside to watch trick or treaters and if you have steps, I would suggest doing the same. I have a huge stairway leading to my front door and when kids come up, inevitably some can’t. So, if possible, make it easier for our really young or disabled trick or treaters and enjoy a night of costume watching. Also, only incorporate your dog if you can control them.

This is not an exhaustive list of all potential disability issues for Halloween, but it’s a good place to start. Most importantly, ask the disabled and chronically ill people in your life what you can do to make Halloween fun for everyone.