Kathleen Farrey

I am a 60-year-old female little person/person of short stature (aka diastrophic dysplasia dwarf) who became paralyzed from the waist down in 2016 after a surgery gone wrong.

Prior to 2016, I lived a “normal” average life. I was raised in a small community by two loving parents. My parents repeatedly told me I was as good as anyone else, and I was encouraged to try and do anything I wanted. As a little girl I loved our family vacations. With a pool in our backyard, celebrating holidays and summer BBQs with my extended family (31 first cousins to be exact), I had the best childhood anyone could dream of.

After attending and graduating from our local community high school, I went on to enjoy a successful 30-year career with a well-known national non-profit, buying my own home, driving myself to and from work every day, paying taxes, doing everything right, enjoying life, never feeling “handicapped” or “disabled.”

In 2005 I met the man of my dreams, my soul mate. Together we enjoyed traveling and experiencing various adventures such as snorkeling in St. Thomas USVI, parasailing in the Caribbean, walking hand-in-hand on Waikiki Beach in Hawaii, snowmobiling in Vermont, whale watching excursions in Massachusetts and so much more!

Then, sadly, after surgery gone wrong in 2016, my world was turned upside down. Life for me came to a screeching halt. At age 55, I suddenly found myself feeling isolated, alone, and for the first time in my life “handicapped” and “disabled.”

Now what, how do I go on? How do I live? How do I take care of myself? Can I take care of myself? So many questions consumed me for days, weeks, months, years and sometimes still to this day.

The time came when my fiancé had to return to work, and we needed to find someone to help me during the day. My fiancé commuted into the city via a one-hour train ride Monday through Friday, leaving at about 7:15 am and not returning home until about 6:45 pm. Being alone 11.5 hours a day and unable to get to the bathroom on my own was out of the question. Being able to use the bathroom was by far my biggest need, along with getting me a cup of coffee, getting me a tissue when I sneezed, preparing my lunch, etc. At this same time, I knew I would not be able to mentally accept a total stranger (aka an aide) sitting in my living room for 11 hours every day – and I was not receiving any financial assistance, so this was an out-of-pocket expense we would have to pay.

Initially we hired Certified Nurse’s Aides (CNAs) to help me during the day, but at a minimum of $25.00/hour to have a stranger sit in my house and eat all day, or sleep because they worked all night at a nursing home, did a great deal of damage to my mental wellbeing. After about 7 months and 4 CNAs, I was extremely depressed. This is about the time when I realized how painfully different I really am.

Purely by accident and by the grace of God, I accidently came across a woman who lived in my condo complex who was looking for part time work. She was a gift from God in so many ways. Not only was she NOT a CNA, but living in the same complex made it very easy and convenient for her to come and go easily, leaving me “alone time” which I discovered I desperately needed to maintain some “normalcy.” She was my neighbor that became my friend that “helped” me during the day. Notice the word “helped” me, because she was NOT a CNA, she never made me feel like a “patient” or “her job” to “take care of me” and for me, that’s what I needed for both my mental health and physical needs.

Then came March 2020, the COVID-19 pandemic. While the pandemic in itself was and still is terrible, along with most of the country, my fiancé started working remotely and continues to do so now. For us, this was a huge benefit, financially and emotionally. I no longer felt like a “patient.” I felt free, I felt normal!

After months of lock down, people were not happy about not being able to go out to dinner with friends, not being able to go to the beach, not being able to be out ‘n about whenever they wanted, but it occurred to me that I hadn’t been able to do any of that for the last 4 years. Pre-COVID vs. post COVID, not much really changed in my world.

While I am technically considered a paraplegic on paper, with the paralysis being from my waist down, in some regard I could be considered a quadriplegic, because as a person of short stature, my arms are not as long as the average height person. Therefore, I’m not able to reach what the average height person in a wheelchair can reach. An average height paraplegic person can most likely reach elevator buttons, but I cannot. An average height paraplegic person can most likely lean forward enough to push themselves in a manual wheelchair, but I cannot. An average height paraplegic person can very often transfer themselves into a car AND get their chair in the car, but I cannot. An average height paraplegic person can most likely transfer themselves from their wheelchair to a sofa or bed or the all-important toilet, but I cannot.

Because my limbs are shorter, I have discovered there are literally NO assisted living devices that will help me be somewhat independent. Several occupational therapists have been to my house to supposedly “teach me” how to transfer myself from my wheelchair to the bed or sofa or even toilet but guess what – they ALL leave saying the same thing, “sorry we cannot help.” My arms are not long enough for me to push down and lift/slide myself on to any kind of slide board. I can’t even open the refrigerator door because in order for me to be able to reach the handle, I have to be literally right next to it, then the refrigerator door won’t open because my wheelchair is in the way! These are just a couple of the 2 million things that average height people in wheelchairs don’t know anything about.

My surgeon had the audacity to say to me that people in wheelchairs “go on and live very productive lives.” How does one do that when they can’t reach beyond 5-6” in front of them! I have had doctors, specialists and lawyers all tell me they are aware of MAYBE 5 paralyzed little people which is why there is nothing available for me – it is not financially beneficial for manufacturers to make items for such a limited number of people.

One of the issues that has forced me to become a prisoner in my home is my inability to use the restroom on my own when I am out in public. Using my restroom is impossible because I need my fiancé (male) to actually lift me from my wheelchair to the toilet. My fiancé can’t go in the lady’s room; I can’t go in the men’s room; family restrooms are far and few between. As a result, I have become a prisoner in my own home.

My fiancé and I thought that perhaps a small RV or travel trailer would be best. We visited Campers World in Kingston NY several months back and while the staff was polite, friendly and understanding of our situation, no one knew where we might be able to have a wheelchair lift installed. We have searched around and while there are factory built accessible RVs currently on the market, they are too expensive, starting at around $200K, and too big. Mostly Class As are factory built accessible, with no smaller Class B or C meeting our needs.

Then suddenly, after dialing a wrong number, I found an amazing company and two amazing men not only able to help us find an accessible Class B but eager and anxious to do so! Elite Van Conversions is a leader in designing and building customized personal use luxury sprinter vans, commercial use vans and toy haulers. We are excited to be working with Bob and Steve as together we design and build the RV we hope to use when we return to traveling, exploring new places and living our best life together. Designing and building a custom RV is pricey, but we hope to do a fundraiser and maybe get a few donations. Bob and Steve have had several phone conversations with us to discuss all the various options and the cost of each option, and they have taken the extra time to listen and understand our needs and to research what would work best for our customized RV. Saying THANK YOU just does not seem enough!

The financial drain of Living This Little Paralyzed Life is daunting to say the least. This drain is felt when attempting to convert our home to a smart home to enable me to use voice commands to turn on/off lights and installing automatic door openers that allow me to open the front door when the doorbell rings. Financial concerns are also relevant when considering the need to purchase an accessible vehicle with ramp (in my case, a used Dodge Caravan at $50K), not to mention all the personal hygiene items I now need on a daily basis, etc.

My hope is that more people will understand that not all disabilities, disorders, or syndromes are the same. Just because a “handicapped accessible” sign is on the door of a restroom does not mean every disabled person can use the restroom as is, just because elevator buttons are lower does not mean everyone can reach, just because you hear of electrical bikes does not mean everyone can actually reach the pedals to use them, just because new exoskeleton suits are available does not mean there is a size to fit smaller people, etc. More resources need to be made available to help little people and/or any person with unique situations.