Fighting Ableism

I run workshops educating able people on how to be a disability ally, and educate disabled people on how to unlearn abelism and be proud of themselves

I love giving back to the community and using my experiences with medical neglect, chronic pain management, self advocacy, and abelism to create positive change in the world. I do life coaching for people with ehlers danlos syndrome and run workshops on living with chronic pain, being empowered with a disability, disability rights, and unlearning abelism. My goal is to publish a kid's book about disability acceptance, an autobiography about almost dying due to medical neglect & medical bias, and starting a charity for people with rare diseases. I believe in Healthcare reform & Healthcare for all.

find my Facebook page "Fighting Abelism"

find my Mutual Aid Twitter @ChronicCrwdfnd

find my reddit @ehlersdanlos_events

find my Instagram @ehlersdanlos.events

support my disability rights articles on substack! all the money goes to me. please share as well.

workshop recordings

all my workshops will be recorded

all my workshops are deaf and sensory processing disorder/autism accessible too, as well as have audio descriptions & large text for the visually impaired

challenging abelism video [cc]

challenging abelism presentation

disability allyship video [cc]

disability allyship presentation

living with eds video [cc]

living with ehlers danlos syndrome presentation

making democracy accessible video [cc]

making democracy accessible presentation

patient self advocacy video [cc]

patient self advocacy presentation

becoming an ally video [cc]

becoming an ally presentation

unlearning internal abelism [cc]

unlearning internal abelism presentation

live with eds 2 [cc]

live with eds 2 presentation

Journaling for depression [cc]

journal for depression presentation

feedback form- please complete

what is a connective tissue disorder?

raising awareness is a matter of life & death when 99% of the doctors I see don't know what EDS is

a connective tissue disorder is a disability that impacts the collagen in the body. thats the protein found in every organ, and more specifically holds your joints together. what does this mean for the patients? you have chronic joint pain and widespread joint instability. dislocations, both full and partial [without blunt force], skin tears, and hypermobility are the classic signs of ehlers danlos. there is also benign hypermobility which doesn't involve dislocations or pain. there are 13 types of EDS, and many co-occuring conditions as collagen is in so many organs. we can have dislocations in any joint without trauma, and there is no treatment or cure. you can only try to mask the symptoms. I’ve seen over 200 doctors, had over 150 pain treatments, and spent over 500 hours at doctors appointments and in the hospital. eds is genetic and progressive, and you get it from your parents.

types of EDS

Ehlers Danlos Syndrome

eds is a rare connective tissue disorder that has caused me to encounter a lot of abelism in the medical system

What is EDS? Ehlers Danlos is a group of connective tissue disorders. Main symptoms include: chronic joint pain, joint instability & frequent/non-traumatic injuries, generalized joint hypermobility, being easily & overly flexible, and fragile or stretchy skin. EDS doesn't limit your lifespan unless it is Vascular type [V-EDS], but the complications around EDS can sometimes be life threatening. These include poor/slow wound healing, lidocaine being ineffective, anesthesia not working like it should, metabolizing opiates faster, and skin tearing with stitches. EDS is hard to treat for multiple reasons, and one of them is due to doctors being greatly uneducated or believing misinformation about these conditions. There are 14 known types of EDS.

Because of all the abelism I've faced in the medical system- doctors saying my condition doesn't exist, I'm too young to have chronic pain, I don't need my mobility aids (when I can’t walk), or I'm just "drug seeking"- I run workshops sharing my knowledge on living with eds/had and chronic pain, both the mental and physical aspects of it. I also have a workshop on unlearning internalized abelism, with an emphasis on self advocacy and self care. I also try to make change by educating able bodied people on abelism, its impacts, and how to be a disability ally.

Support my work

my substack: EDS awareness blog

You can support my writing by signing up for paid or free articles through my substack. I aim to raise awareness about EDS, medical bias, and Healthcare disparities through my articles. feel free to share this link

Rare Aware Newsletter

eds workshop 1

all proceeds will go to my charity community medical solutions that directly supports the medical needs of people with EDS
-questioning stereotypes of disability
-living with rare disease
-managing multiple doctors/spsecialists
-work access and accomodations
-emotional and practical aspects of going to the hospital. difference between ER & urgent care
-finding the right mobility aids
-chronic pain and mental health
-managing the financial aspect of chronic illness
-support group time and suggestions for next session
♡eds giveaway after every event
♡resources I make myself such as doctor tracking worksheet, eds vocabulary, list of relevant specialists, links to support groups, and doctor anxiety worksheet

it will happen the 1st Saturday of every month for 7 months

eds workshop ticket

workshop 2: be an ally

learn how to stand up for disabled people as an able ally

be an ally ticket

workshop 3: empowered in pain

learn to turn your shame into pride and unlearn internalized abelism

empowered in pain ticket

eds support group link

they have several options like for vascular eds, hypermobile eds, and classical eds

ehlers danlos virtual support group

My Ko-Fi

My ko-fi

if you could tell the world one thing about EDS what would it be?

Clearing up myths about EDS, hypermobility, and disability

I asked as many people as I could this question. here are all the answers

- just because you can't see my pain doesn't mean it isn't real

-you not hearing about a condition doesn't mean it doesn't exist

-dont invalidate somebody pain just because you don't understand it

-EDS is real whether or not you admit it. end of story

-asking for basic accessibility isn't asking for too much. its not getting special treatment. its asking for equality

-EDS doesn't just meant being flexible. it isn't only joint pain. its so much more. its way more complex. its easy injuries, waking up during surgery, dislocations with no trauma, gastroparesis, constant pain, and spine issues

-the human body is so complex and can do so much. don't invalidate somebody because you are closed minded and can't accept somebody's rare condition

-Having a rare disease isn't being a hypochondriacor munchausens. I understand that, in the UK, people who report that they think they may have EDS are, per some legislation, noted as potentially having Munchausen's.

-being young and looking "fine" doesn't mean I'm not disabled or in pain

-HSD isn't less severe than EDS, its still systemic (aka effects every part of the body) we just don't have the more rare traits. Just because you can't see our disability doesn't mean it isn't real. Sometimes people use mobility aids only part of the time, its normal and doesn't mean they're attention seeking.

-at first you think pain is normal because there's no awareness for chronic illnesses. then eventually you learn that its not normal. sometimes I still can't believe I'm not normal and being pain free is a reality for most people

-most of the doctors I see tell me I'm faking for drugs, EDS doesn't exist or is a trendy diagnosis that shouldn't be given out, or I'm "hysterical" (next time you're calm when you have multiple dislocations.... call me!)

-being disabled is expensive and people also say you get everything for free while you pay out of pocket for life saving medication

-Even if I talk about the party tricks or the fun soft skin or the bendiness that made me so good at gymnastics, that does not mean that awful things are not going on in the background that I can’t talk about. And that I’m not a china doll. Stop treating me like one.

being adaptive

being adaptive reduces pain by making sure you don't go over your limits

if you struggle writing use ergonomic pens or pencil grips

use voice to text apps if you have issues with hands for longer notes

use the correct mobility aid for your level of limitations. be okay using different aids for different days

use braces. kt tape, bandages, if you need extra support

find recourse for adaptive exercise and chair yoga /cardio

adapt activities so you can sit as much as possible and don't need to lift anything

voting:
-mail in voting
-online voting option
-accessible in person voting

marches:
-have a shorter march
-have places to sit
-stream online for people who are housebound and bedbound
-chose a good road with sidewalks
-have rest breaks
-people who can't come make signs for able people to carry
-people who can't come call in to speak
-have plenty of seating areas/space

covid high risk
-masks required unless medically exempt
-take temperatures
-social distance

wheelchair users
-put temp ramps in

autism/spd
-have a quiet area they can go to
-have notes they can read during and after
-no loud sounds
-have earplugs available for free
-have audio captions available

HOH/deaf
-sign language interpretation
-subtitles of all audio

blind/visually impaired
-have space for people with white canes to walk
-have people giving guided directions to people who dont have white canes (or do and want directions)

allergens/MCAS:
Try to keep away from strong smells like: perfume, hevy scent deodorant, perfumed soaps and detergents. No common allergens like peanuts. no smoking.

PTSD

minimize common triggers

respect service dogs

have an annPSA on trigger minimizing

anxiety

have liscenced counselors standing by

have free fidget toys

have an anxiety free room where they have weighted blankets, calm music, low lights

march accessibility checklist for organizers

the impact of abelism

Guide followers to your most important links

as of 2015 one in 5 disabled people were under the poverty line

7 million disabled people have depression and anxiety that interfere with their life

12.6% of the population is disabled

disabled people don't deserve abelism

mental health and abelism

abelism of capitalism

impacts of abelism

be mindful of your thoughts and feelings and challenge your negative thoughts

challenging internal abelism

-understand that others invalidating your disability doesn't take away your diagnosis
-recognize its easy to be gaslit by people in power (like doctors) so when they say anelist thing it can leave deep wounds
-validate yourself: an invisible illness is not an imaginary illness. a rare disability is not a made up disability.
-be mindful of how you feel when using medication and mobility aids. if you feel shame and guilt you have internalized the abelism of others and are taking it out on yourself
-don't beat yourself up for feeling these ways either. society is abelist and we learn from society. it makes sense we would pick up abelism from it
-build a supportive, validating, respectful network
-everybody (even healthy people) have limitations and we cannot go past them without hurting ourselves. it's natural some people have more limitations than others, but that doesn't mean something is wrong with you.
-if you think you need a cure to be happy you definitely ha e internalized the idea disability is inherently a bad /negative thing and its not. its just a different state of being.

strategies for unlearning abelism ›

pushing back against internal abelism

the experience of internalized abelism is both incredibly distressing and very common

how disabled people experience internalized abelism

internal abelism

pushing back against internal abelism

internal anelism happens when you repeatedly experience abelism and then believe what you hear

push back against internal abelism

the struggle to accept we are worthy

struggling to feel valuable in a society built on abelism

medical abelism and rare diseases

medical abelism could have killed me

my doctors did not believe my condition even *existed* and neurologically poisoned me with a psychiatric medication until I became an amnesiac blind. paralyzed, and had seizures. I couldn't do anything by myself and needed 2 twenty four hour caretakers. they also didn't notice these were known side effects of an overdose of the meds I was on. I am one of 11 cases of this syndrome.

I had to move to another state to get diagnosed and taken off the meds that destroyed a year of my life. I had to re-learn how to walk, bathe myself, and write. my memories never came back, but I can form new ones. my eyesight and feeling returned eventually. the seizures stopped. imagine if they didn't? and the worst thing is I still didn't have enough evidence to sue for medical malpractice. that's how broken the system is.

common responses I get from doctors when I describe EDS is "thats impossible" or "you're too young to be in pain/have chronic pain" and another frequent reply is "why do you need a wheelchair though?" even when I just said every joint in my body is unstable and can dislocate just from walking.

blog

why do I talk about ableism?

many people ask why I talk about abelism [so much] and the answer is both simple and complex

the simple answer: abelism is everywhere. its in the workplace, the government, our laws, our jokes, our relationships, our judgements, even the disability community and in our own thoughts. the only way to change it is to discuss it!

the complex answe: abelism is a complex system of cultural, medical, social, and legal constructs that keep disabled people down and punish us for speaking up for ourselves. I use my negative experiences to create positive change, so I don't see it as obsessing over a negative like many able people do. as abelism has negatively shaped the lives of so many people with chronic & complex conditions like myself, its essential we do not let the conversation be shut down because we feel self conscious or ashamed.

learn more about what abelism is and how it impacts the disabled community

what is internal abelism?

internalized abelism

internal abelism is when a disabled person internizes the abelism they experience and believe what they hear. this can manifest in them feeling guilt or shame about their disability, limitations, or use of mobility aids. this also looks like thinking "I need a cure to be happy" or "my life is ruined because of my disability" because none of those are true.

when you hear people say things like "if I was in a wheelchair/that disabled I'd just kill myself" you may believe life isn't worth living if you are disabled. and while disabled people can have a much lower quality of life, that is due to the abelism in the medical system. the abelism that prevents medications from being affordable, that means you have to prove you are disabled enough for a wheelchair to insurance, and you may only have one specialist in the entire state or coast because of how rare your condition is! this is not just "how things are" this is medical abelism.

talk about unlearning abelism - disability cultural center ›

what is an ally?

being an ally is a practice and commitment

an ally is a privileged member of a group who uses their privilege to help benefit a member of a marginalized group/help benefit the marginalized group as a whole. in this case, that means an able bodied person using their privilege to help raise awareness for the issues surrounding disability & abelism, and use their group membership as leverage for the disabled group to get access to new opportunities they would otherwise not have been able to reach.

what does allyship entail? educating yourself by listening to and engaging with disabled people with respect, not entitlement. it includes raising awareness for disability rights causes, contributing to the disabled community by being present in protests, challenging abelism when you see/hear it. being an ally is an underrepresented form of love and respect. it is a commitment and a practice.

why be an ally? some disabled people are fully or partially nonverbal, and some have a severe intellectual disability and can't verbalize thoughts & feelings like others can. some disabled people can't speak in venues like able bodied people can due to lack of accessibility. some chronically ill people have severe symptoms that limit their functionality and energy, causing them to have brain fog and need extra rest. being an ally allows you to communicate the feelings and needs of the community, using your platform of privilege, on the issues that matter the most!

how to be a disability ally

an ally is somebody who is not disabled but stands up for disabled peoples dignity and rights

-being an ally is not conditional. you can't be an ally to only one person/a selection of people and not everybody. if you exclude people from your allyship, you are not an ally. you either are an ally to everybody or nobody. if you are only an ally to the people you like, you are not an ally, because basic respect should not be conditional.
-if you want to learn what the disabled experience is like talk to an actual disabled person is
->but also respect their space and know what you can easily look up (generic info on conditions, blogs, vlogs, and much more) and what you should talk ->to somebody about
you can learn about laws and history by books and Google. don't use disabled people like Google its very frustrating and draining unless u want an in depth conversation
->be mindful about how you approach somebody. there's a world of difference between somebody coming to me and saying whats wrong with you before hello and somebody starting a conversation then asking if they can learn more about my condition
-> be aware some people have ptsd from how they acquired their disability and respect if they do not want to talk about it. imagine if somebody asked you about your medical history while you were rolling down the street, or shopping, or just trying to live your life. how would you feel?
-if somebody calls you out on abelism, do not deny it. do not make excuses. listen to what they say and then take that into account. try to grow from the experience. saying "but one time I helped a disabled person" or " i cant be abelist. my grandma is disabled" doesn't help the situation at all.
-constantly grow and learn and try to improve yourself. you may be a better ally to full time wheelchair users than to part time wheelchair users. you may not include trans or black disabled people in your advocacy, or you may not consider how having a rare condition changed how abelism is presented to a disabled person
-watch your language. do not use mental illnesses as adjectives. do not use disabilities/conditions as an insult ("you're do autistic/r*tarded dude!") and also call out the abelist language of others. do not joke about disability
-question and challenge stereotypes of all kinds of disability; rare conditions, progressive diseases, invisible illness, chronic illness/pain, young disabled people, wheelchair users (manual, part time, full time, and power chair) and discuss it in the open with others
-call out the abelism of others even when your disabled friends/relatives are not around. the only way to dismantle abelism is to challenge it constantly and show that we will not stand for disabled people to be disrespected just because they are not there.
-consider the idea that a disability is not automatically a bad /negative thing. while they can be painful, its only a tragedy when society fails to protect its most vulnerable group (like during covid)
-keep up to date on disability rights news and read about disability rights history
-dont tell a disabled person to be quiet/not speak about their doctors, disability, pain/symptoms, or experience with abelism. its a part of our day to day lives and we already have to be quiet about it and need a space to be open about our reality.
-if a disabled persons disability makes you uncomfortable, its not their problem or fault. its your issue.
-do not avoid using the word disabled. its not a bad word and avoiding it minimizes our experience as disabled, how much medical care we need, and the abelism we face. it also implies disability is a bad thing. if you say "you are so productive though! you aren't disabled, you're handicapable!' you need to stop. words like that were created by able people to avoid the word disabled and that phrase implies disabled people are not able/capable
-help a disabled person out of good will/generosity not pity
-remember allyship is a commitment and practice and takes time to become second nature! mistakes are natural and don't get too down. being willing to learn and help is good enough
-recognize that our society and medical system is abelist and we all have to participate in the system to survive and thrive. because of this we have to work to dismantle this system while inside of it because it also ruins and ends lives (like price gouging that forces people to ration life saving medication like insulin)

examples of abelism to avoid

My Top Picks to educate yourself on abelism and able culture

allyship is using your privilege to lift up the marginalized communities

allyship is a commitment and practice of mutual trust and respect. it is not necessarily an identity, but it can be.

abelism leads to....

-communities of color being perceived as less intelligent and more physically fit/valuable
-womens bodies are seen as a vessel to produce children and pleasure through sex
-disabled people's bodies are seen as disposable. access is seen as a "perc" not a right/need. reasonable accommodations are dictated not by need or level of care but by cost [in capitalism] because we are not seen as productive
-violence, poverty, and war are tools to create disability and control a population
-healthcare and good health is a right of the rich and something the poor need to earn
-immigrants are seen as dirty and diseased and something we need a "cure" for

how abelism impacts the disabled community's mental health

learn more about how to be an ally

websites, blogs, and vlogs, as well as articles written by disabled people are a great way to become a better educated ally. and a well educated ally is a well prepared ally

disability allyship

abelism in the government

an article about legal abelism that doesn't even begin to cover everything, like that disabled people can legally be paid sub-minimum wages in the usa which is legal discrimination

legal abelism

able bodied culture hurts disabled people

abelism negatively impacts the financial, physical, and mental well-being of disabled people

culture and abelism

a wonderful community of passionate, generous, strong individuals

many people think it's weird to build a community around something like a disability. but this is all wrong, because its based on the idea that a disability is automatically painful, negative suffering. the disabled community is a vibrant, inclusive, diverse community full of people who want to improve the lives of the people around them. and there's nothing wrong with that! to us, being disabled is a state of being and doesn't dictate our quality of life.

the stigma around being active in the disabled community is alive and well, though. it confuses me, because the same thing could be said about being LGBT or being black and having a community around that. isn't it having a community around homophobia, or racism? no, its so much more than that and the focus is on solving the issue of bigotry, not self pity.

the role of community in empowering disabled individuals

improving your allyship

reflect on these questions

do I make events accessible to all disabilities?

do I advocate for only one type of disability?

do I believe and perpetuate stereotypes about disability?

how to I contribute to abelism and systematic oppression of disabled people?

do I include disability in conversations on intersectionality?

would i stand up for disabled people even if it didn't benefit me?

how have I internalized abelist messages from society?

how can I better the lives of disabled people?

why is it important to recognize how disabled people contribute to society?

why is it important to learn about the history of disability rights?

an i advocating for all types of disabilities equally?

how can I challenge stereotypes of disability?

how can I stand up for disabled people's dignity and rights?

how can I get involved in the disability rights community without speaking over disabled people?

its important to constantly reflect on yourself and your advocacy to see where and how you can improve. discuss these questions with other allies and disability rights organizers

affirmations for disabled and chronically ill people

when others invalidate you, validate yourself (you deserve it)

I love affirmations, and also love sharing them with my chronically ill friends when they are struggling. they also really appreciate and benefit from repeating these mantras to themselves and so I'm sharing these with all my disabled followers ♡

I am not my illness

I'm not unreliable, my symptoms and illness are.

I am more than my mobilility aid (even if that's what people see first)

I am more than my medication, diagnosis, and mobility aid. I am a whole human and anybody who cannot see that is missing out

I am deserving

I deserve love, respect, and good medical care regardless of my limitations.

you are valid

I am valid and I don't need anybody to tell me that my condition is real for it to be real

abelism is not your fault

if somebody has power and is misusing that power against me, its not my fault or because I'm a fake. its because of their own bias and abelism

my disability is real (good for rare conditions)

I don't need others to recognize my symptoms to recognize my disability is real

even doctors can be wrong [when doctors invalidate you]

even doctors can be wrong. I trust the doctors who have taken the time to listen to my reports on my body, and don't have to listen to the ones that don't listen to my reports. I know my body best

let go of what people in power say

I acknowledge how easy it is to believe people in positions of power but when they misuse their power to invalidate me, i don't have to internalize it. I chose to let go of their judgements

doing my best looks different

doing my best looks different on good days than bad days. but whatever my best is, its enough

I'm in control

I did not choose my illness, but I do have power over my treatment, pain levels, and my condition

more mantras

my disability isn't an inspiration, I am

I am not inspirational for having a disability. I am inspirational for who I am as a person.

more mantras for disabled people

My Work —

I'm starting a charity for people with rare diseases

1. relieve medical debt: ONE in 3 people with rare diseases us in severe poverty. the other 2 out of 3 experience unexpected medical costs of $2500 a month

2. increase access to medical care: disabled people are 2x more likely to recieve inadequate health care. 3x more likely to be denied health care. and 4x more likely to experience medical malpractice or medical neglect. people with rare diseases take on average 4.2 years to be diagnosed, with 2 to 3 misdiagnosis, and 67% say inadequate information prevented them from getting a diagnosis. 10% of people wait more than 10 years for a diagnosis.

3. social support/community building: have support groups, do education, advocacy, and outreach programs. connect people to resources. offer life coaching and workshops for chronic illness.

self advocacy for disabled patients

self advocacy is the only way I get what I need

my need for self advocacy:

realistically over 95% of the doctors I see don't want to treat me. don't acknowledge my condition exists, or say my condition is too complex for treatment. this means I constantly need to advocacte for decent treatment. recognition, and doctors who will and can treat me with respect and competency

my use of self advocacy:

I advocate for my health goals every time I step foot into a doctor's office. I have to. otherwise I get misdiagnosed and mistreated. its very tiring, so self care is an essential part of it. but, practice also makes it much less tiresome. my advocacy has led me to get diagnosed and treated, when I started with doctors who said EDS was fake and I didn't need any treatment.

who needs an advocate?
everybody needs an advocate at one point or another, but some need it more than others

people with rare diseases

people with invisible conditions

young disabled people

people with chronic health issues

when may you need to advocacte for yourself?
with your GP/PCP

with a specialist

with insurance

in the hospital

in the pharmacy

at school or work

why self advocacy is important

self advocacy is important for many reasons

self advocacy handbook

areas of self advocacy

the goals of patient advocacy

assertive communication, self respect, standing up against invalidation, health goals, knowing your rights, protecting boundaries, asking for help, planning resources, and self care after appointments

advocacy training (free)

self advocacy

assertive communication

passive communication

letting others control the conversation even when its about you. Passive communicators often lack of respect for themselves, disregarding their own opinions, feelings, needs, and desires. Passive communication places one's own needs and desires below those of others. The internal conflict that can be created by passive behavior can lead to: Stress, Resentment, Seething anger, Feelings of victimization, Desire to exact revenge.

assertive communication

you use actions and words to express their boundaries in a calm manner with an air of confidence. Being assertive shows that you respect yourself because you're willing to stand up for your interests and express your thoughts and feelings. both what you say and how you say it are diplomatic and calm.

quiz

places the opinions of others above their own

has confidence and self respect

protects boundaries

poor boundaries

causes internal conflict

empowers you through authenticity

usually with people who have anxiety, low self esteem, or trauma

answers

passive

assertive

passive

assertive

passive

self advocacy workbook

goals of self advocacy

advocating for your health goals when your doctor is apathetic

standing up against mistreatment, invalidation, and disrespect from medical providers

knowing your rights and being vocal about them when they are being infringed upon

building up self respect and understanding the negative impacts of lacking self respect

utilizing assertive communication and minimizing passive communication

practicing protecting your boundaries from strangers and people in power

creating specific action items for every health goal

creating a list of social, professional, and informational resources

insisting on the same level of care others receive regardless of a marginalized identity

practicing self care after advocating for yourself

self advocacy workbook

Things To Remember

Remember you are valid & nobody can change that

you are not high maintenance. your needs are just different. when you get proper care.

your overall level of maintenance decreases. when you do not receive care, your overall care needs increase and you are seen as complex and "too much". the reality is that you have more needs than others because of medical neglect.

even if you needed long term care that was very intensive, it doesn't mean you don't deserve respect

these conditions aren't things you chose or can control, and people disrespected you for things you can't control is the core of abelism

you are not needy, high maintenance, or hysterical. you are expressing your needs and people are expressing sexism and racism

you should not have to "deal" with it. you should not have to live with these symptoms because they "aren't that bad". this is peoples abelism and racism showing that they have little empathy and think you should be able to put up with more pain than they would say to another group

having psychosis, anxiety, or depression doesn't make your experience with a disability invalid

self respect exercises

understanding you deserve the same level of care as everybody else is essential

list 5 positive impacts of self respect, and 5 positive impact of respect from people in power

list 5 negative impacts of lacking self respect, and 5 negative impact of not getting respect from people in power

list 5 negative impacts of not being respected on your mental health, in order of magnitude

self advocacy for rare disease

health goals

its important to have health goals so you know what to advocate for

short term:

1 to 6 month goals

easily accomplished

a PCP can help you reach these goals

minimal referrals needed

doctors don't have long wait times

don't need to book in advance

no recovery time after treatment

long term:

6 months to multi year goal

more complex

specialists needed

more than 1 referral may be needed

booking in advance may be necessary

more than 1 doctor need to work together to accomplish this

may need to take into account recovery time after a surgery or procedure

Long & short term health goals:

what specific activities and resources do I need to achieve my mental health goals

what professional and social support do I need for my long and short term goals

prepare health goals before appointments so you have something to fall back on when stressed

setting health goals

stress management

break down goals into smaller steps

practice self care before, during, and after

have social and professional support

be very clear on what other people can help you with

practice assertive communication with a trusted loved one

if scents calm you, bring your favorite essential oil

keep the endgoal in mind- the stress is worth good health!

resource planning

there are 2 types: social & medical

social

list professional support you need for each specific goal

list social support you need for each specific goal and how you will ask for help

list what help you need from insurance, like a health coach

medical

what information do you need to accomplish your goals

what medical aids do you need

what medication or treatment do you need

what paperwork do you need to sign?

what referrals do you need

do you need authorization or pre-authorization

strengthening self advocacy

how to improve your advocacy

role playing with a trusted friend/family member

health goal worksheet

practice assertive communication

practice preserving self respect

make a self care plan and stick to it

have notes for all appointments so when you have anxiety you have something to fall back on

bring something to your appointments that calms stress /anxiety

have clear action items for all health goals

have a list of all available resources to you

relaxation

deep breathing, meditation

nap/rest

hot shower or bath

progressive muscle relaxation

gentle exercise like yoga or a swim

art

mindful walk outside

time with a pet

enjoyment/emotional wellness

journal

talk to a loved one

spoonie support group

gratitude

treat yourself with a small purchase

turn to faith/ find a deeper meaning

reflect on tomes you overcame another hardship

do a hobby that makes you happy like cooking/baking, crafts, gaming

reach out for support on social media

rights of disabled people

what laws give us rights? what rights do we have?

what gives disabled people rights?

The Universal Declaration of Human Rights (UDHR)

The International Covenant on Civil and Political Rights (ICCPR)

The International Covenant on Economic, Social, and Cultural Rights (ICESCR)

The Inter-American Convention on the Elimination of All Forms of Discrimination Against Persons with Disabilities (CEDPWD)

public places: The rights persons with disabilities have include, freedom of speech, respect for privacy, the right to both marriage and family, the right to education, the right to health, access to public spaces

workplace: you have access to reasonable accommodations and no discrimination. you do not have to disclose your disability to your employer

anti discrimination: equality before the law. Laws in America prohibit discrimination against persons with disabilities in any: Education, Workplaces, Public program, Private housing, Access to polling places

External link

access to employment
Workers with disabilities are less likely to receive promotions as. Additional studies have demonstrated that persons with disabilities in America who do find jobs earn less than their co-workers without disabilities

A number of the colleges in this nation still do not have adequate support services, or even awareness of disability issues, and remain inconsistent in their interpretations of their requirements in regards to the accommodation of persons with disabilities. Many students with disabilities are forced to pay for the extra costs of their accommodations and may need additional time in order to graduate - something that increases their overall final costs related to education

Students with disabilities are also less likely to graduate from high school. A scant 12.5% of persons with disabilities in America have a Bachelors degree, compared to the national average of 30.3%

rights of service dog owners —

Nearly all states (except for six) have laws that protect assistance animals from criminal interference, theft, and assault. Only Alabama, Alaska, Iowa, Maryland, Montana, and West Virginia do not appear to have such laws. five states do not cover service animals in-training: Hawaii, Michigan, South Dakota, Washington, and Wyoming

Laws protecting disabled pedestrians, typically known as "White Cane Laws," appear in most states.

About half the states offer licensing fee waivers/exemptions for service dogs.About half the states offer licensing fee waivers/exemptions for service dogs.

Finally, more than half the states have laws that make it a crime to fraudulently represent that a person has the right to be accompanied by a service animal.

barriers to access in public places

lack of curb cut outs

poor sidewalk quality

construction blocking off accessible route

lack of training of drivers to use wheelchair lifts in busses

elevators broken due to poor maintenance in subways

trash or homeless people’s tents blocking the way

steps to enter & no ramp

no accessible parking

to narrow corridors

no handrails

access to healthcare

access to healthcare can be complicated by many factors

A study performed in the state of California found that 22% of persons with disabilities experienced difficulties with accessing health care facilities. The study also found that 12.9% of persons with disabilities reported unfair treatment by their health care providers due to the disability they experience

People with rare diseases face even more challenges. 76% of patients said lack of information prevented them from getting a diagnosis, and the average time to get a correct diagnosis is 8 years (but for 19% of people its over 10 years!). 39% of rare disease patients said they paid for ineffective treatments. 95% of rare diseases do not have any FFA approved treatments. on overage people get 2 to 3 misdiagnosis before getting the correct one.

protection from the law

when the law is not ready to accomodate you, your safety is at risk

Millions of Americans with Disabilities are deprived of their rights, despite legal protections related to us, due to a lack of awareness, intersecting marginalized identities, and failure to provide us with reasonable accommodations in a number of areas. Persons with disabilities in this nation continue to face considerable levels of discrimination related to employment, services, education, and additional areas

When situations such as natural disasters occur, persons with disabilities are frequently denied our right to protection. A study on emergency management found a majority of Federal Emergency Management Agency (FEMA) emergency managers did not have the training to work with special needs populations, to include persons who experience forms of mobility impairments. Estimates demonstrate that around 73% of the fatalities related to Hurricane Katrina in New Orleans were persons over the age of 60, despite the fact that this population comprised a mere 15% of the overall population involved

Social Service organizations in America are many times unprepared to address the needs of persons with disabilities. For example; shelters for battered women commonly lack staff members who have the training needed to work with the unique needs of women with disabilities. Police officers and other law-enforcement officials only receive minimal amounts of training related to accommodations related to us.

LGBT Healthcare disparities

LGBT people are more likely to experience medical discrimination

LGBT People face many healthcare inequities. They are more likely to develop certain health conditions, more likely to be uninsured, and face higher rates of providers discrimination compared to Cisgender & Heterosexual patients. Medical providers can mistreat patients in the form of verbal abuse, medical neglect, denying LGBT related healthcare services, and blocking access to medical transitioning for trans patients.

LGBT Patients & Healthcare disparities

LGBT Healthcare Disparities

Anti-LGBT Healthcare Bias

LGBT Patients Discuss Healthcare Bias

More than a Band-Aid: LGBT Healthcare Inequity

Healthcare is a Right, not a Privilige

Rights of LGBT Patients

LGBT Patient Access to Healthcare

LGBT Patient Access

Bisexuality & Healthcare Bias

Closing the Gap: LGBT Healthcare Disparities

Closing the Gap in LGBT Healthcare Disparities

LGBT Barriers to Care

Barriers to Care for LGBT Patients

Bridging the LGBT Healthcare Disparity Gap

Bridging the LGBT Healthcare Disparities Gap

LGBT Healthcare Resources

Including LGBT People in Healthcare Equity

Healthcare Disparities Among LGBT Patients

LGBT Youth & Healthcare Inequity

LGBT Healthcare Disparities

Preventable LGBT Medical Provider Discrimination

LGBT Patients fear Provider Bias

Opioid Hysteria & Untreated Pain Leads to Suicide

TW: medical neglect, suicide, abelism

Chronic Pain Patients Feel Stuck in Opiate Crisis

Loss of Perscriptions Leads to Suicide

Chronic Pain Suicide Risk Study

Doctors Face Consequences for Appropriate Opiate Use

Chronic Pain Suicide Risk Study

Other Side of the Opiate Hysteria

CDC Opiate Guideline Causes Harm

Stigma of Opiate Use

Opiate Epidemic Kills Chronic Pain Patients

Chronic Pain & The Opiate Crisis

Unintended Impact of the Opioid Hysteria

Suicides Caused by Opiate Laws Must be Addressed

Chronic Pain without Treatment Leads to Suicide

Opiate Hysteria Causes Double in Chronic Pain Suicides

Suicide & Opiate Related Deaths

CDC Ignores Pain Patient Suicides

People Commit Suicide from Lack of Pain Treatment

Chronic Pain Patients Claiming Voice in Opiate Hysteria Discourse

Oregon Medicaid Threatens Use of Chronic Pain Patient's Opiates

Association Between Opiate Cut-Offs & Suicide or Overdose [PDF]

Dealing with Bad Doctors —

Disabled people face disproportionate medical bias, here are my tips

A breakdown of the difference between abelist and incompetent doctors, and how to cope with each type.

Abelist Doctors

This type of doctor believes tired & harmful stereotypes about disability, and chronic illness. They are likely to turn down disability accomodations, mobility aids, and deny access to pain medication because it will make you "dependant" and is "giving up." Your age, the prevalence of your disability, and how visible your condition is will impact you.

When dealing with abelist doctors, dispelling the myths they believe using both facts & appeals to empathy/emotion can be useful. If that doesn't work, try having another doctor speak to them for you. If all else fails, it's best to change doctors because denying the meds you need doesn't serve you at all. When dealing with abelist doctors its also very difficult- but important- to make sure you are calm and focused when you advocate for yourself & educate your doctor. When you get upset at your doctor, and they are already dismissive, it only gives them more reasons to dismiss you. If your doctor respects authority more, and your parents are supportive, try having a family member come with you & describe your symptoms when the doctor will not listen.

Ignorance Is A Barrier To Access To Care

Incompetent Doctors

When a doctor is incompetent, they may want to help but may not know how to. Bias is not the major issue, but a lack of experience & knowledge in this case.

When dealing with a doctor who is unfamiliar with the condition you think you have, sending them scholarly articles or a basic explanation of your disability can help. Doing part of the research and finding the appropriate specialist for them to refer you to can also be beneficial. Its important to remember to work with your doctor, be as clear as you can, and use all the resources at your disposal. Printing out common words, comorbidies, or symptoms to remind yourself of what you need to bring up is also a good idea. If your doctor continues to struggle & cannot provide the level of care that you need, consider finding a new doctor. To make sure your PCP has experience with your condition you can call and ask them, or take local reccomendations from people with your disability.

Importance Of A Diagnosis

Many uneducated and/or abelist doctors have spread the myth that because there is no cure there is no need for an official diagnosis.

There are many reasons a diagnosis is helpful: Medication, mobility aids, and tests are covered by insurance. Doctors know of possible complications in an emergency (such as fragile joints, lidocaine not working, issues with anesthesia, fragile skin, poor healing, fast opiate metabolism) when they read your chart & see your diagnosis. Work/school accomodations based on hypermobility are possible with a doctor's note & an official diagnosis. EDS also technically qualified you for ssdi/ssi payments. When/if a cure is invented you can start it faster, and until then you can participate in research studies and trials of medicines. And screening for comorbidities can be done faster and easier when they know which conditions are associated with your disability.

my shirts

disability awareness shirts

shirt designs by me $30 each. free shipping. email emilmcclean@outlook.com to order with the heading "shirt order"

shirt store link

etsy

Recommendation #1

bring awareness to the inaccessibility of protests

Recommendation #2

show your support for being a disability ally

Recommendation #3

show your support for disability rights

Reccomendation #4

show support for the loved ones in your life with EDS

Reccomendation #5

raise awareness for the cause of EDS

Kids Book- model photo contest

Help us get disabled models !

meet @disability.and.we my illustrator for my kids book !

We are creating a children's book to help change the image of disability. We are a disabled author and illustrator and are wanting disabled characters. That's where you all come in. We are running this photo contest to find a model for each page of the book. If chosen you will be illustrated and put into the book. Our goal with this book is to help kids understand that disability isn't a bad thing and that it may make us seem different but we are all people just like them, and disability is something to be embraced. We also want to show the diversity in disability!

hi I'm emil. I am a disabled and trans writer and disability advocate. I almost died of medical neglect from an ableist doctor and now I raise awareness for ehlers danlos and the challenges people with rare conditions face in the medical system. I want to write a book about this to help others struggling to get treated and diagnosed. I am working on a kids book to teach able kids that disability is not something to fear and we are all the same inside even if we look different. I want to show disabled kids they have nothing to be ashamed of and deserve respect and love. I aim to show the beauty and diversity in the disability community. I also write articles about being young, trans, and rare in an able bodied world.

Hi! I'm Griffin. I'm a chronically ill and disabled illustrator who is currently studying social work. I've spent most my life fighting to get proper treatment and a diagnosis, which has built me into the disability advocate I now am. I started drawing as a child and now do graphic design for social media and non profits. Thanks to technology I can draw better than I can write by hand. I hope in life I can help change the way people see disability, because we are happy and worthwhile just like everyone else.

form for submission