So… today is the first dose of my new med for Rheumatoid Arthritis (seropositive).
I’m nervous. This means that moving forward my immune system will be even more fragile. I’ll basically be on a weekly low dose chemo drug and … wait … to see if it helps.
I’m not asking for sympathies or anything like that - I simply want to document my journey and show that just because you’re young and ‘look’ healthy —- it doesn’t mean you’re healthy. #InvisibleDisability
Can we normalize asking something other than “So what do you do” when meeting people? Because my current answer of “struggling to manage the demands of chronic illness while maintaining a semi functional, semi clean household” gets awkward. #mecfs, #LongCovid, #ChronicIllness, #Disability, #InvisibleDisability
Recently saw a post on LinkedIn with the quote “Abelism looks like calling people 'inspiring' for navigating a system that is designed for exclusion, while doing nothing to hold the system accountable.”
As Stella Young said “We are not here for your inspiration”.
Inspiration porn is so debilitating to those living with disabilities.
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"When someone leaves a note on a car or makes a comment, they are making rash judgments about someone they’ve never even met and enacting a gross injustice on someone who faces daily obstacles already.
"4. If someone would like to help those with #disabilities, there are better ways to do this than by leaving notes on someone’s car or making disdainful comments... You can spread the word that many disabilities are invisible and learn more about why disability and illness are often considered “invisible.”..."
"Those with #disabilities face hurdles every day the able-bodied cannot fathom. If you are concerned that the #disabled are getting a “privilege” that is somehow “undeserved,” you are entitled to your opinion but please don’t act on it."
When you have an #InvisibleDisability and you're on the second floor of a building at the end of the day and the staff has already shut down the elevator because "there are no disabled here" and they refuse to turn it back on upon your request because "I'm sure you can handle a few stairs."
When you give up and go down the stairs, heavily leaning on the banisters, at a snail's pace, while most other people look on like you're putting on the strangest act. Steaming with anger, red from embarrassment, worsening your injuries for no reason, the seconds feel like hours.
Just one of those daily #ableism things, you know? 🙃
I've been walking with a cane lately, partially because it helps me strain less during surgery recovery, and partially because it gives me something to wave in front of impatient drivers who want to give me mere centimeters of space when I'm crossing the street 🥴 :blobcat_notlikethishyper:
I've always cared about #disability from a mostly outside perspective, and I don't claim to know anything or speak on anyone's behalf here, but being forced into temporary limited mobility/ #InvisibleDisability has been extremely empathy building.
One thing that stuck out immediately is that folks cannot grok the idea that someone could walk a little and not need a chair, but still need curb access, accessible entrances, handrails, etc. Like there seems to be a binary view of mobility. I can walk, but only about a block. I can stand, but I need something to lean on after a few minutes. I can't pick things up off the ground, or lift more than 10lb. I'm fully capable of dealing with these constraints, except when people design things or make assumptions that can't fit someone like me. And of course, having limited mobility, especially temporarily, is not even uncommon!
"10 year Boy with Down Syndrome Assaulted by Bus Driver - Abuse of Students with Invisible Disabilities by Educators"
⚠️ CW - Stories on mistreatment and abuse of students with invisible disabilities in schools across the country. May be disturbing to some.
Yesterday, a bus driver for the Upper Darby school district in Pennsylvania, was charged with assault, unlawful restraint, false imprisonment, and endangering the welfare of a child.
Juliet Pratt was captured on surveillance cameras, duct taping the a student with Downs Syndrome around the ankles and chest to restrain him. The footage also show the child, who was already in a safety harness, caused no disturbance and remained in his seat. Regardless, nothing warrants this kind of abusive behavior to people with invisible disabilities, especially by someone involved in child education. The March 8th incident was not the only. The bus driver admitted doing this appalling act to the child, at least one other time. Pratt cut the tape restraints with a seat belt cutter to free the boy upon arrival at the school.
There seems to be no mention of charges related to disability protectections in news reports. Has she done this to others? Would she have done this if the child did not have a disability? If Ms. Pratt singled the child out for this treatment because of any disability related reason, (ie - thinking she could get away with it because of the boy's DS), authorities may want to consider this an ableist hate crime.
Unfortunately, this problem is not uncommon. In some places, the techniques used are legal, bringing harm to many students with invisible disabilities. In Virginia, a 10 year old autistic boy, had the "bones in his hand and foot crushed" by an educator. The injuries were caused by a staff member who was isolating and confining the child, in what was called the "scream room".
Many reports of similar abuses have surfaced in Connecticut schools as well. In one case, a second grader with ADHD was held down, and locked in confinement after a manifestation of symptoms. Aside from the mental and emotional wounds caused, just as in many other cases, the child suffered physically injury. According to the story linked below, students have been restrained and isolated "thousands of times causing dozens of injuries" in Connecticut schools. This hardly sounds like accommodation and community intergration.
Then, there's Xavier Hernandez, who died as a result if being held down and restained by multiple staff members at "Boulevard Heights" school for "students with disabilities" in Texas.
These are the people entrusted with the job of shaping young minds? What lesson does this type of behavior teach other students about interacting with people with invisible disabilities; that they should be restrained, isolated and subjected to physical and mental damage? Considering these, and many other such acts, it seems many educators could use a lesson on understanding and accommodation of persons with invisible disabilities.
“Cannabis, Alzheimers, TBI and Invisible Disability"
Click here 🧠 to expand.
Cannabis can still be a controversial topic. The medical benefits for those with physical and invisible disabilities are no secret. People with Invisible disabilities, such as brain injury and PTSD, can be afforded great relief from symptoms by the flower.
Israeli Dr. Raphael Mechoulam, is a well known cannabis research pioneer who has been studying the plant for decades. Read about some of his work in the link below.
Other Research indicates that individuals living with Alzheimers and Dementia may also benefit with less risk and damaging effects than other drugs currently used.
Findings from another Israeli Researcher, Dedi Meiri, argue that there may be benefits to these individuals as well.
"There is a large and growing body of anecdotal accounts of the efficacy of cannabis for treating the symptoms of Alzheimer’s disease and dementia. The shortcomings ... life-threatening dangers...with... frequently prescribed pharmaceutical treatments... makes cannabis a particularly compelling option – especially considering its solid safety profile."
Even more research from the National Library of Medicine (PubMed.gov), speaks about the neuroprotectant antioxidant qualities of the herb. The PubMed link below contains several links to other studies on cannabis and it’s benefits for people with disabilities.
The human body is said to have CBD receptors "built" in. I am neither condoning, nor condemning the use of “Natures Pharmaceutical"; nor am I suggesting it's use. I am merely presenting medical findings.
According to laws in many places amidst these findings, the jury is still out on the subject.