Jessica's service dog.

To Everybody Who Trained My Service Dog

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Dear everybody who trained my service dog,

Over the past four years you have put tireless hours into raising a puppy who will become my service dog in just a few short weeks. As if that is not enough, you give the dogs away for free. Being a college student raised by a single mom, I could never afford a service dog, but that does not mean that I don’t desperately need the help.

Your organization truly helps people who are often ignored by society. I don’t have much, so all I can do is say thank you over and over again — but that will never be enough to actually convey what I am feeling. Everybody who had a role in training any dog in this program is my hero. Not even six months ago, they were are all strangers to me. Little did I know they existed and wanted more than anything to change somebody’s life. From the bottom of my heart, I can say you have done that. This dog is going to be my whole world.

I am affected by Ehlers-Danlos syndromepostural orthostatic tachycardia syndrome, polysplenia syndrome, half a leaky heart on the right side of my chest, severe scoliosis and lordosis, mixed cerebral palsy and more. I was born with these conditions, and for the most part have managed to come to terms with them because there has been no other option. I am proud of who I am, but that does not mean the rest of society is. I have definitely had my struggles. I have a twin who is “normal” and at each step of my life I have watched her go do everything I have always dreamt of being able to do.

Over the past two years, my medical conditions have gotten much worse. I have been in and out of the hospital and emergency room. I am constantly dizzy and fall frequently. I cannot walk up an incline, because despite our best efforts my oxygen remains low. All my joints are hypermobile. While to an outsider that might seem cool or interesting, it means I am in constant pain and must modify every activity I do to try to preserve my joints for as long as possible. I don’t eat salt, dairy, or gluten in hopes that my abdominal pain will improve. The biggest difficulty is that none of the conditions can be treated because it will interfere with another condition.

Doctors have told me that as far as treatments go, I am out of options — or was until you came into my life. I’m afraid to leave the house in case I get dizzy. If I fall, I am likely to dislocate. While I am in school, the last few years I stay in my room or bed except for going to class.
Although I have all these medical conditions, I appear healthy and “normal” to an outsider. I have been called a liar, I have been yelled at for using my disability placard, I have been asked to prove my flexibility by doing a yoga pose or dislocating my shoulder. Both of these things are extremely painful.

I was so afraid I would apply for a service dog and not qualify for one because my disabilities are invisible. That did not happen. Everybody who worked with me was so respectful and kind. I was treated as a person instead of a disability or a liar. Sadly, this was a new experience. I was never asked to share my story for sympathy or prove I was disabled.

I have laid awake at night many times wondering about my future. Will I ever be able to live alone? Will I get through college? Will I get a job? Is there any place that will accept me as I am, and potentially even embrace my disabilities as an asset instead of a liability? I can finally say I found that place. Before starting this process, I did not want to do anything because I thought I would always need to have somebody with me. I had given up on planning my future. It is hard to rely on other people all the time; you begin to feel like a burden instead of a friend or family member. This has now all changed. Thanks to you, I will have the help I so desperately need.

I now see my future as bright. I will be able to leave my house. I can go on vacation. I will have help getting to my classes and picking things up when bending over makes me dizzy and lightheaded.

So again, to everybody who trained my service dog, you are my heroes. Thank you for my life back. Thank you for giving me a bright future. Thank you for showing me that somebody cares. I will be forever grateful for all you have done, and I just hope I can pay you back by educating people about service dogs and embracing your generosity by living my life to the fullest.

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I'm Tired of Having to Explain My Invisible Disability to Strangers

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Most people have a idea of what “disabled” looks like, and when this idea is challenged it causes a certain degree of cognitive dissonance. If your disability isn’t immediately obvious, it must be imaginary, of course!

The truth is that disabilities and illnesses come in so many different shapes and forms, and aren’t always visible on the outside. Just because a person may look healthy to you, it doesn’t mean they are.

People with invisible disabilities face discrimination and judgment on a daily basis due to a simple lack of awareness and understanding. As someone living with an invisible disability, I have found myself in some astonishing situations, from the emotionally challenging to the downright ridiculous.

I am sharing my story with you today in the hope of raising much-needed awareness for people living with invisible illness. We will be #INVISIBLENOMORE.

When I was 15 years old, I sustained a traumatic head injury involving three fractures to my skull. This injury caused a number of medical complications and ongoing debilitating symptoms. It has now been 5 years since my accident, and I still have impaired balance, dizziness, profound hearing loss to the left side, visual blackouts, and chronic fainting – historically ranging anywhere between 0 to 50-plus episodes in a single day.

On the outside, I appear like any other healthy young woman of 20. But on the inside I am fighting a daily battle with my symptoms. This is only made worse by those who pass judgment and make assumptions about me.

When people find me unconscious in the street, I have woken up to remarks such as “typical drunk teenager” or “she’s probably on drugs.” I get the same remarks when I am struggling to keep my balance during a dizzy spell.

I have been unlucky to faint into the road on a few occasions. When regaining consciousness I discovered cars beeping their horns at me, or yelling “get out of the road, you druggie!”

People have spat at me, called me abusive names, stepped over me, or simply pretended I do not exist. My disability might be invisible, but I’m not! Fortunately these incidents are rare. Most people are kind, or can at least keep their judgments to themselves.

I cannot drive for medical reasons, so I travel via taxi where possible. It’s best to avoid the nightmare that is public transport with a hidden disability. When I do use public transport, I am likely to experience some kind of judgment or verbal abuse.

Chronic fainting, dizziness and impaired balance make it unsafe for me to travel without a seat. But because my disability isn’t visible, I have difficulty accessing the priority seating area. If I am already seated, but then the bus or train starts getting busier, I will hear things like:

“Why isn’t that girl giving her seat to the elderly gentleman? Young people have no respect these days. I hope she’s ashamed of herself.”

If I get onto a busy bus or train, I may have to ask an able-bodied person for their seat. The usual response when I explain that I have a hidden disability, and need to use the priority seating area, is one of conflict. People say things like: “No, you don’t look disabled!” Or “What’s wrong with you then? Some people have real disabilities, you know.”

This has happened so many times that I am now often too sacred to ask for a seat when I need one. Even if I show my medical alert card, people refuse to believe me.

I have felt so pressured by the dirty looks people give me when I don’t offer my seat to an elderly person that I have given up my chair and then fainted moments later. There are usually plenty of other able-bodied individuals who could have offered their seat, but because I am young everyone looks to me. It’s a horrible feeling.

I shouldn’t have to explain myself. I shouldn’t have to declare my private medical history to complete strangers. Stating that I have a hidden disability and need to use a seat should be enough, but it rarely is.

Clearly there is a long way to go for disability awareness. I hope that by sharing my story, I have opened some eyes. The next time you see someone who doesn’t “look disabled” use a disabled parking bay, an accessible toilet, or a priority seat, stop and think; maybe that person has an invisible disability? #INVISIBLENOMORE

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Thinkstock photo by Toby Burrows.

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What the Betsy DeVos Confirmation Means to Me as a Mother of a Child With Down Syndrome

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For me, watching Betsy DeVos at the confirmation hearing in January for her nomination as Secretary of Education seemed like witnessing a fish out of water, as what she expressed was inconsistent with our laws and educational terms.

She appeared not to know the Individuals with Disabilities Education Act (IDEA) is a federal law — one which ensures students with disabilities a right to an education tailored to his/her needs. This was a red flag for many of us who parent children with disabilities.

According to the National Center for Education Statistics:

“In 2013–14, the number of children and youth ages 3–21 receiving special education services was 6.5 million, or about 13 percent of all public school students. Among students receiving special education services, 35 percent had specific learning disabilities.”

I have a 9-year-old son among the 35 percent who have specific learning disabilities. Alex was born with Down syndrome, or trisomy 21, which is a chromosomal disorder resulting in an extra copy of the 21st chromosome. For Alex, the extra chromosome means he has an intellectual disability, which qualifies him for special education services.

Without a fight, and because of the federal regulations under IDEA, Alex began early intervention (EI) services at 3 months of age as covered under Part C of IDEA, which provides children with a developmental delay birth through age 2 with multidisciplinary therapies specific to the child’s needs.

You know the adage, “It takes a village to raise a child”? Well, I believe it can take a country to raise a child with special needs. The services and supports he receives both educationally and personally are significant. Alex qualifies for a modified curriculum in a public school setting supported by a special education teacher and classroom aides. In addition, he receives physical, occupational, speech and music therapy. Without the team of professionals tailoring his educational needs, he would not be succeeding in a public school setting.

So when I witnessed DeVos’ seeming lack of knowledge of a federal law that provides my child along with 6.5 million children receiving special education services, I didn’t only envision the logistical nightmare this might present to individual states if this wasn’t federally funded — I also felt my child was not seen.

To not be seen, valued or accepted can feel like discrimination. The sneaky thing about discrimination is the discriminator might not be aware of her bias, lack of understanding or polarized perspectives.

For a few weeks proceeding DeVos’ hearing, a surge of energy spread like wildfire. Many people made phone calls to representatives, sent emails or attended rallies imploring that Betsy DeVos not be voted in as the Secretary of Education. Yet, on February 7, 2017, DeVos was voted in with 51-50 vote.

And while I sit with my son Alex at the dining room table helping him with his homework, my throat tightens at the idea of how his school experience may change. Not just the fundamentals of schooling, because I am aware that with each new administration there are shifts. I’m mostly concerned that in this political era, there might be others who will not really see my son.

In my opinion, President Trump’s mockery of an individual with a disability on the campaign trail in 2016, coupled with the Secretary of Education’s seeming lack of awareness of federal laws supporting children with special needs, are examples of discrimination. Once we understand what we’re up against, I believe it becomes our work and duty to unify peacefully. But that doesn’t mean we have to speak quietly and raise our hands for permission.

For progress to happen, I believe we should make those calls to legislatures, sign those petitions and attend those rallies. These years ahead might be difficult and heart-wrenching, but I believe opportunity for true growth is right in front of us.

Editor’s note: This story reflects an individual’s experience and is not an endorsement from The Mighty. We believe in sharing a variety of perspectives from our community.

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6 Things I've Learned Since Being Granted Social Security Disability Benefits

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Last year, I wrote about what it was like to have to accept the fact that I am affected enough by my disease to have to apply for disability benefits because I can no longer work. I was granted disability in October of 2015. Here are some things I have learned about being on disability since then that I never knew.

1) In certain circumstances, you have to pay taxes on your award. And they don’t really tell you this, either. It all has to do with whether or not you are married and how much your spouse earns. Chances are, if you are single and Social Security Disability Insurance (SSDI) is your only source of income, you will not have to pay taxes, but I would look up the rules. I have 10 percent withheld automatically to offset what I may owe at the end of the year.

2) You are eligible for Medicare after two years. But, that two years is calculated from your date of disability, not your date of decision. The difference is this: your date of decision is the date you get approved to receive SSDI. As I said earlier, I was approved in October of 2015. That is my date of decision. But, the SSA also has to determine when you became disabled enough to receive benefits according to your medical records. In my case, it was the day I first fractured my back, July 22, 2014. So when I received my paperwork stating I was eligible for Medicare in July of 2016 (instead of October of this year like I assumed) I was a bit confused.

3) You do not have to accept Medicare when it is offered. There is a lot of confusion around this. There is also a question about being fined if you refuse to sign up the first time Medicare is offered. Under Medicare statutes, you do get fined if you don’t sign up the first time it is offered to you — unless you meet certain requirements,one of which is being under age 65, disabled, and covered by a spouse’s insurance through an employer of over 100 employees. So you must be able to prove you are covered by acceptable health care insurance already. I am covered under my husband’s insurance so I was able to decline Medicare until I actually need it.

4) Do some research first. The above being said, there are actually insurance companies and businesses that will require you to take Medicare when you are first eligible. There may not be many, but they are out there, so it is very worth it to make that phone call rather than being found out and held responsible for all the payments your insurance agency made on your behalf before they found out your eligibility status.

5) Don’t trust the SSA. In stating that, I actually mean make copies of the paperwork. Whether or not you accept or decline Medicare, make copies. And don’t lose them. I lost mine. And then the SSA lost my refusal postcard. So now I am enrolled and paying for a service I don’t want or need. I have to “disenroll,” which means I have to pay premiums 30 days from the month we’re in. So anyone wishing to disenroll will be on the hook for paying the next month’s premium, and there are no refunds unless you can prove you refused it before they signed you up. It’s your fault, unless you can physically prove it’s their fault.

6) Staying “healthy” is a double-edged sword. This is the hardest to explain. Since my disability determination lies in my fractured back (I’ve since fractured it a second time) mobility is a big issue for me. Walking is the only way to try to strengthen my back and keep me from losing so much muscle tone that I end up in a wheelchair — a possibility anyway due to my chronic diseases that were not considered in my disability case. But walking can also be counted against you in disability case reviews. So how do I explain that I walk but it still hurts? That I walk because I am terrified and I’d rather deal with the pain of walking than the pain of another broken back? That I walk but I still cannot work?

Well, these are the few insights I have gained in the last year and a half of being “in the system.” I’m sure I’ll learn a lot more. Maybe there will be a Part 2 to this article in the future!

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What You Should Know If You Laughed at This Viral Photo of Me

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This is my 15 minutes of fame. If you check sites such as the People of Walmart or Reddit you will most likely find this photo.

woman on scooter in grocery store

The worst thing about this photo is that people think a fat woman tipped over a cart because she was too lazy to get out of the cart to get the case of soda.

I have a condition in my spine called spondylolisthesis. In spondylolisthesis, one of the bones in your spine — called a vertebra — slips forward and out of place. This may occur anywhere along the spine, but is most common in the lower back (lumbar spine). In some people, this causes no symptoms at all. Others may have back and leg pain that ranges from mild to severe. The most common symptoms in the legs include a feeling of vague weakness associated with prolonged standing or walking. In my case, the longer I stand the more numb and weak my leg become. I have been known to fall because of this condition.

I am also very obese which does not help the situation in my back. I have learned that due to my mental illness – I have used eating as a way to cope. I fight my weight daily and have recently joined a gym. But my weight is still a battle.

So this happened several years ago (around 2011 to 2012). I was at a very low point in my mental health. I also was experiencing a lot of pain and weakness that day. I took a cart because I was grocery shopping for my family. I went to get a case of soda for my husband (he drinks this stuff by the gallons) and I turn and tried to grab a case off the shelf and the cart tipped. I thought I saw a flash of light and heard some young girls giggling. I thought nothing of it cause I am used to hearing people make fun of me or saying snide remarks. It was nothing new.

A few months later, I see this photo on a site making fun of people of Walmart. I have also seen this photo attached to stories that aren’t even true about this situation. The only thing I am glad about is it did not capture my face.

The reason I am sharing this is because people think it is funny to laugh at people with disabilities. You cannot see my disabilities but they are there and they are real. So next time you see photos making fun of people just remember you know nothing about these people or the struggles they face every day. It is never just harmless fun to laugh at someone.

Here are a few photos of me to prove that it is me in the photo above.

man and woman facing each other holding hands

jennifer wilkinson and young girl

My spine disease started with degenerative disc disease. Degenerative disc disease usually starts when a person is close to 50. In my case it started in my early 20s and that was before I was obese. After the disc is gone spondylolisthesis happens. Both my parents had a form of this disease and both had to have back surgeries in their early 30s. So there’s a good chance my children can get the same spine disease.

My obesity is caused by my American diet and also by my mental illnesses. I have major depressive disorder, PTSD, and avoidant personality disorder. I have experienced several cases of emotional trauma that lead to these illnesses. So I ended up using food to cope with my mental illnesses.

My main point in this answer is I did not choose to be photographed at a low point in my life. The fact that people assume I am fat because I am lazy is false. Or they assume I am fat because I want to be on disability. Obese people are treated as less than human and as something to ridicule. I just want people to be aware that fat people are people too.

I just want to get something clear – I am not asking people to accept or condone obesity. Obesity is a major health problem causing many illnesses and diseases. I also am not asking people to pity or feel sorry for me. What I want is compassion, understanding, and respect as a fellow human being. I am a person. Please treat me like one!

This blog was originally published on Quora.

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What I Wish People Understood About Polyamory and Disability

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Since my disabilities became more visible, more pronounced, I have noticed that according to many people in society, I’m not expected to have a relationship… and I’m definitely not supposed to have a non-traditional relationship.

I’m polyamorous. I fell in love with two people a long time ago. I didn’t know what to do about it, so I set them up with each other as it seemed like the easiest option. A few years later, with my disabilities worsening, my pain becoming more and more pronounced, and my independence falling off in little slivers every other month, they were there for me.

They were the only people to look at me the same way, starting from when I was 17, and even now at 29. They saw my pain at 17 and how it bothered me, but it didn’t change how they were with me. Even then, people got annoyed that I always had a headache. When I was hurting, other people would say “Again? Really?” but they didn’t.

They get me melon slices or some apple juice and do what they can to make me smile. When dealing with high levels of chronic pain, it’s amazing to find someone who helps you be able to smile, even laugh through it.

A few years ago, I was alone. My long list of problems, physical and mental, had come to a head. I was living alone, but I couldn’t make my own dinner, let alone look after a house, or myself. They dropped everything for me. Uprooted their lives and moved into a different country for me, from Wales to Nottingham, England. Incidentally, it turned out to be a good thing for one of them as he was able to get better health care.

It took us a while to find a house. They originally moved into a house one street over so they could be close all the time, willingly! I felt like I was a burden, but they showed me day after day that I have value. Even on my worst days they made me feel wanted and needed.

Finding and renting a house that accepts a person on disability benefits and someone who has a dog was hard, but we did it. Even now when I need help with clothes some days and can’t stand or even sit up, they still look at me the same way, and best of all, they understand. They don’t second-guess my pain, they believe me on a level that’s so difficult to explain because I have felt it so rarely.

I don’t meet many new people in the real world. When we do and they discover we are a throuple they are either interested, or they squint at my wheelchair and give a look of “Yeah, right.” The interested people I like, the others not so much.

Online people are less polite. They can say whatever they like because they aren’t doing it to my face. I’m just a person on the computer and an easy target because they think my relationship style is “wrong.” It’s “immoral” and “disgusting” before they discover I’m disabled; then it’s “impossible.”

I’ve had people tell me disabled people shouldn’t have relationships because they are effectively abusing their partner. They say I would be withholding things from them that they would expect in a “normal” relationship with a “normal” person. It generally boils down to an assumption that “Disabled people don’t have sex.”

I have a problem with this. For one, it implies the only important thing in a relationship is sex. There is much more to a relationship: trust, caring, honesty, closeness, happiness, even cuddling and snuggling in bed. Second, it insinuates disabled people are less, which we are not. I might not have the energy, the endurance of an able-bodied person, and some days my pain might be so bad all I can do is curl up, but that doesn’t mean I don’t like to be intimate with my partners. I love them and being close to them makes me feel better. Even if I wasn’t able to, I’m still not less; I’m still a person who is just as deserving of life as any able-bodied person.

I’ve noticed this really shows up in a polyamorous relationship. A lot of people have misconceptions when it comes to polyamory. We are a closed Triad, so there isn’t that much of a difference to a couple… we’re just a throuple. I’ve had people telling me I’m dragging them down, ruining their lives with my disability, using this innocent married couple to be my carers. A few go the other way, saying I’m being led on, I’m just an extra because they’re married and I’m being used. One person referred to me as a “token cripple.” I don’t know where this idea came from that if you’re disabled, you are supposed to never have a relationship.

I feel so amazingly lucky that I found not one, but two people who love me, not in spite of my disabilities, but for me. I don’t have to hide my pain; I don’t have to hide my depression.  They spend time researching my conditions of their own volition; they actually want to be able to talk to my doctors and help me get my treatments quicker. With “fibro fog,” when it comes to appointments, Anthony is my memory. In the past, even getting people to understand the basics of my conditions was about as fun as pulling teeth. I feel lucky that they actually want to know.

Recently I’ve had a recurrence of trigeminal neuralgia. It’s been about six or seven years since I last had full TN attacks. When I suddenly screamed in pain, clutching my face, they sprang into action to find ways to get the pain down to a tolerable level and make me comfortable. I didn’t need to ask for help, and I think that’s what it all comes down to.

I think at the most basic level, a relationship with any type of spoonie comes down to two very important things.

1) I don’t need to ask. This is important. Sometimes I will ask for specific help, but in general I don’t need to ask for things multiple times a day. Every time I ask them to do something for me, it makes me feel like a burden. That I’m this weight they have to bear. I know they don’t see me this way; it’s entirely in my head. When I don’t need to ask, I don’t get the constant feeling. They make me feel wanted and loved instead.

2) I’m believed. Being believed can lift you up, it can validate you, it can pull you out of the darkness of knowing you’re in pain but because people didn’t believe your pain you wondered if it was really that bad. Being accused of exaggerating and making up your pain can lead to constantly second-guessing yourself. Having a person just believe straight away is like they took this huge weight off of me and threw it away. I feel lighter; it gives me the strength to trust myself that yes, my pain is this bad, and no, I don’t deserve it.

A relationship is of course more than these two things, but as a disabled person in a relationship I look at things a little differently. If you boil it right down, these two things are an amazing basis for a relationship. The three of us build more and more layers on top, but they are the sturdy structure it’s built on.

People have many opinions about my relationship style, being a disabled person in that relationship and even my orientation (I’m asexual – I feel romantic attraction and I love my partners, and not feeling sexual attraction has nothing to do with my disabilities, it’s just as “normal” as being straight, gay or bi etc.) I even enjoy some of the views as some people are genuinely, happily interested. But when it comes down to it, I have something amazing and no one’s opinion of it will change that.

I’ll never stop being amazed they believe me, they understand me and they still want me. They make me stronger; they make me believe I can fight this and get through anything that gets thrown at me.

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