Lylly's daughter and a friend at a play date.

My daughter is 5 and has quite the social life! She’s made many friends from various facets of her life and my life combined – school, church, sports and recovery meetings. She’s the type of child who writes an invite list to her birthday party that’s longer than her Christmas wish list. Needless to say, she is asked to join friends for play dates on a pretty regular basis.

This is where Mommy becomes more of a detective than a parent. This is when I bust out with my list of questions for the parent whose house I’ve never been to. I have to consider everything about the structure of their home and its accessibility to me before I can decide if we’re able to go or not. Are there stairs leading into their home? If so, are there hand rails? Is the house all on one level? Are there carpets? Rugs? Toys or clutter of any kind in the middle of the floors that I’d need to try to navigate around? Is there an animal who might jump on me, causing me to lose balance? Or could the animal be so small and fidgety that I trip over them or can’t process all their movements in order to walk around? What’s the bathroom like? Is there something I can hold onto while in the restroom?

If you think this list of questions is long, think of how I feel asking all of them. For starters, I never truly trust the answers I’m given. I may trust the person completely in every other way, but able-bodied people do not have to think like I do. I myself never thought this way until I became disabled, so I surely can’t expect others around me to understand my needs immediately. I get nervous that something’s being left out: a small step up into the foyer; those two tiny stairs up the sidewalk that the person forgot to mention, and oh, there’s no railing there either; the fact that the bathroom is on the second floor.

I become concerned my daughter will be so excited the day of her play date, yet when we arrive at her friend’s house, there will be some barrier preventing me from entering the home and we’ll have to either move to our house (which is way less exciting because other kids’ toys are always the most fun to play with!) or reschedule for another time and decide where to meet that’s accessible for me. And, there have been those instances where we’ve not made it into the house, even though I asked the litany of questions.

I feel guilty and can’t even pinpoint why – some of it is because I wish we could just go like other families do. I wish I could be a “normal” mom for my little girl. I have guilt when we must meet at our house, knowing my daughter enjoys playing with toys that aren’t hers. Yes, kids often bring toys from home to share, but it would be nice if my child could get out of our home more.

I feel like I’m interrogating the other parent; as if I’m making sure they have the “right” kind of home. I worry they’ll be insulted by all my questions – here they are, treating me like any other mother (as I deserve to be) but I’m asking them tons of structural questions and focusing on my differences. I feel like it may seem I’m making a big deal out of a simple play date. “Wanna come over and play?” For most families it’s a “yes” or “no” question, not an opportunity to ask for the blueprints of the person’s house. But it’s what I must do in order to know what my answer will be.

There’s a small part of me inside that whispers quietly, “This is OK. Don’t feel guilty. Don’t stress out. God didn’t make a mistake in making you, nor making you a mom.” That wee small part of me also insists that it’s just a play date. The important part isn’t where the playing occurs but how (with enjoyment and happiness), why (because my daughter is a wonderful, funny, compassionate friend) and that it is happening. When she’s 20, I’ll ask her if she remembers having play dates with friends – I bet her answer will be along the lines of “Oh, yes! I had lots!” instead of “Yeah, but they were always at my house.” She’s got the best attitude about everything… even though her mom’s attitude can be saturated with worry, anxiety and guilt. Guess that’s just another thing that proves I’m like any other mama!

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Two years ago I was diagnosed with PTSD, agoraphobia, bipolar disorder, and major depressive disorder. This year I have been diagnosed with POTS, postural orthostatic tachycardia syndrome. My family and I decided that one of the best options for my treatment was a service dog to help me with my panic attacks, my night terrors, and to give me emotional comfort when out in society. Being 14 about to turn 15, I was not in favor of having a Labrador retriever or something similar in size because I didn’t want that kind of attention. So we agreed a Chihuahua would work best for me.

We trained her for a year and a half, and she has since been simply perfect at her job. We have started training once again so she can learn to work with a wheelchair, as I now need one because of my POTS. I understand that because she is so tiny, at first it might be hard to believe she is in fact a service dog. But if you casually watch us going about our daily lives, you can see and judge by her behavior and not her size.

I am assuming (but I’m not sure) that you, sir, did not watch us for even a second before you so rudely told me I looked healthy and there is no reason for me to be dragging along my “service puppy” — your words, not mine. I told you that she was not bothering anyone, and she has every right to be by my side in the store. Before you could say anything else, I turned and walked away. You, sir, have absolutely no right to make that assumption about me.

You have not seen me at my worst, when I wake up in the middle of the night gasping for air because just a second ago I was convinced I was being attacked all over again. You did not see me when I stood up from the bathroom floor, only to fall unconscious again and have no way to call for help because I couldn’t get up and risk fainting again. You are not there for me on the days I can’t even lift my head from my pillow because it would cause me immense nausea — but she is. She brings me a bottle of water to swallow my anti-nausea pills when I can’t get out of bed. She comforts me in the middle of the night when I can’t breathe from the terror of the nightmares. She fetches my cell phone for me so I can call for help without risking my life.

Please, I ask you to keep your thoughts to yourself about all of these “unnecessary service puppies.” These dogs are in fact very helpful to a lot of us with chronic illness or disabilities. You do not see my struggles. Just because you can’t see my disabilities when I’m at the store, it doesn’t mean they’re not there.

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Before I wrote this post on 10 common misconceptions about people with disabilities, I reached out to people online who also have various kinds of disabilities. I soon realized — we are all clashing with culture in similar ways. We face the same assumptions attached to our visible limits.

I wish I could tell you I don’t hear the following questions very often. But I heard question #1 and #5 about me just a couple of weeks ago when I was out with a friend.

1. How old is she?

2. What’s her name?

3. Can I pray for her?

4. What’s wrong with you?

5. Are you her _______ (fill in the blank with a family member)?

The questions themselves aren’t necessarily the problem. It’s the way the person approaches the conversation. So many times they don’t acknowledge me. They don’t start with a “Hello” or “How are you today?” Nope. They jump right into asking me (or the person with me) one of the five questions.

I sit in my wheelchair, sometimes shocked into silence, sometimes annoyed and hoping to hurry up the interaction. I’m still surprised when I see misconceptions in action. I’m trying to learn — how can I teach this person on the spot? What can I do to spread a little awareness right now?

I admit I’m not always ready to answer in depth. Putting words to what happened and understanding why I grew frustrated prepares me for the next time. Because sadly, there will be a next time.

We long to fight what is being assumed and show the world —

Our lives are not less than.
Our bodies are not less beautiful.
Our stories are not less exciting.

We, the people living with a visible limit, want to remind you —

It’s not about what you see on the outside.
It’s not about what you assume is a limitation.
It’s about looking beyond all that.

We simply hope you will find the me behind the disability.
Those who see beyond the visible are the ones we want in our lives. They are the people who matter to us.

Listen to culture less.

Love the ones who care more.

Then, we can worry less about bridging the gap… because we’re already building a stronger community for you and me.

Changing these misconceptions begins right outside our door.

Are you in?

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The Brooklyn Public Library offers a Books by Mail service which mails library assets to people with disabilities.

Read the full transcript:

This library mails books to people with disabilities.

Brooklyn library’s Books For Mail program delivers library books to your doorstep.

The service is provided free of charge to those with physical disabilities or visual impairments that can make it difficult to go to the library.

The library provides a wide selection of regular print books, large print books, books on tape and videos.

Similar programs are also offered by other New York City libraries such as Queens Library and the New York Public Library.

To learn more, visit

In the next seven years, lots will happen… keep your cool. You can do this.

1. You feel old at 16. You really aren’t old. You’re still a baby really.

2. You can put makeup on if you wish. If any of your “boyfriends” (I use this term loosely) wants you to wear makeup, what is this saying? Don’t do it to please him, I beg of you. If you want to wear makeup, do it. If you don’t, don’t. Also, the makeup phase you went through… you either look like a ghost or an orange, so make sure you get some advice from the drug store assistant in selecting the right shade. Please, respect your skin.

3. Don’t jump into a relationship so quickly. Boys are cool… I get that, but don’t make the mistake of being someone who is just there when he wants you to be…don’t let him use you. Your broken heart will mend. After your relationship ended, you felt heartbroken for a while. Accept the good times that were had and move on… but take heed of point number two.

4. Don’t miss out on family time for the sake of fake relationships and friendships. You only get one family… love them while you can. Your parents love you more than you realize.

5. It’s only at the age of 23 that you’ll begin to realize the importance of self-care — especially when it comes to trying to gain some control over your chronic illnesses and emotions.

6. Your chronic pain will still be with you at age 23… but don’t be sad about it. As a 23-year-old, pain is literally a part of my life as it is of yours at age 16. There’s no point in me lying. You’ll have some horrible times with it that require urgent medical care, but you’ll also have a select few times in which you are as pain-free as you’ll ever get to. You’ll also discover that friends close to you also have your condition or something similar, and they will understand.

7. You’ll still need surgery.

8. Don’t over-exert yourself. I refer back to the point of self-care.

9. The bags under your eyes will remain… sorry. This can’t be helped; blame the medication.

10. You’ll still be in your wheelchair. This is something I know you hoped wouldn’t happen, but it has, so just accept it. At age 22, you’ll get a brand new, beautiful wheelchair that you’ll fall in utter love with. A beautiful black wheelchair with sparkly purple bits (your favorite color!). Look forward to that. It’s amazing.

11. You’ll drive. Those people who said you wouldn’t be able to drive were wrong. Hand controls do exist! You’ll go through two cars and absolutely love both of them. Your hand controls are also pretty funky, and people will also want to know how you drive — show them.

12. You’ll make some amazing friends and rekindle old friendships. You know those friends you thought you wouldn’t chat with again because they’re too busy getting on with their own lives too? Well, you’re wrong. They’ll soon become the greatest of friends to you and you of them. You’ll never know such love for friends as you do with them.

13. Please don’t give up on your sporting opportunities. You’ll sincerely regret this as an adult. Even though you’ll eventually go back to wheelchair basketball, if you had stuck if through then, you could have traveled the world and made your career out of it.

The author at a party smiling, wearing black top with silver glitter

14. Be honest. You’ve always been honest but as an adult, this is of even more importance.

15. Stop worrying about other people while forgetting about yourself. That friend who just decided to up and leave? That wasn’t your fault… it can be a part of growing up.

16. You’ll experience some absolutely terrible and life-changing situations you would never have imagined possible. Your viewpoint of life and the people around you will evidently change, and your life won’t ever be the same again. You’ll fall into a horribly dark place, but you’ll be lifted out. You’ll grow up and mature as a result of it. Don’t worry… you’ll get through it. Take all the help you get; don’t be stubborn.

17. Your cancer, your wheelchair, your anxiety and your chronic illnesses will not define you — they are just an additional part of you.

18. Your morals, values, wants and needs will change. Accept it… don’t challenge it.

19. Your wheelchair basketball club will become like your second home. Value the people in it, because they’re amazing.

20. You’ll have two jobs, and oh, did I mention you’ll go to university? You won’t move out, but you’ll be at university! Three years of university will go very fast. (I didn’t believe anyone who said that either.)

21. Did I also mention that you’d be set to becoming a teacher in September 2017, but for a number of different reasons, it didn’t happen this year? Don’t worry. Your friends and family will always support you and actually, after discussing it in some depth, you’ll realize you made the right decision.

22. Be open with the health professionals. Whatever you say is nothing they’ve not heard before. Leave your dignity at the door.

23. Trust yourself and your instincts. You are right — trust me.

24. Don’t let certain people control you. You are your own person.

25. Scared of doing something? Take that leap of faith.

These are only some of the things that will happen, but take each day as it comes and don’t expect too much from yourself. You’re doing great at this “adulting” business (even if I do say so myself).

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Shortly after my 11th birthday, I sat in my brand new wheelchair in the dimly lit mobility store. I tried not to notice the blonde receptionist in the corner consoling my silently crying mother, giving her a pep talk. “She needs this; it will allow her to go outside more, and start high school. It will help her.” A few minutes later, my mum came back teary-eyed with an unsure smile on her face as she confirmed the lease on my first wheelchair.

I saw my reflection in the window. I looked small and pale, surrounded by the bulky frame of the electric blue wheelchair. I tried pushing myself around a little, soon to weak to do anymore. I couldn’t stop looking at my reflection. I look back now, and I realize at that very moment, my life changed forever.

In the previous six months of my illness before getting that wheelchair, when I did go out I was so limited by how far I could walk that it hindered me drastically. I couldn’t hold up my body, and my hands were too weak to use crutches — they were raw from trying. Every time I left the house it would end in tears of exhaustion — even from stumbling around the local corner shop. This meant I was housebound for about four of those six months.

A turning point (what felt like a moment of defeat) was trying to walk around a clothing store with crutches. I had lost so much weight in recent months that none of my clothes fit me anymore, so I went out with my parents to look at clothes. After a few minutes I remember standing there, hunched over my crutches and wondering how I would get back to the car, fighting tears of exhaustion. I ended up sitting on a ladder left out by a store worker to rest for a few minutes before the trek back to the car with my parents. Once I got to the car and got my breath back, I told my mum I wanted a wheelchair… simply so I had a better chance of being able to do “ordinary” things without being so exhausted I cried.

Within days, my mum had arranged for a rented wheelchair supplied by the British Red Cross.

The following weeks were fabulous. I was able to do things I would never have been able to do — get new clothes, go to a corner shop, sit in a park. I was able to get a coffee with a friend without it destroying my energy for days after. I felt a new lease on life and was excited to go out again. I had hope about starting high school and simply having that bit of independence.

It wasn’t all good, though. The novelty of having a little independence soon wore off when I noticed the pitiful looks. People talking to my mum or friend instead of me, people putting on their “childish” voice to talk to me. The sneers. The confused looks from children. Being at crotch height. The indignity of having strangers haul me up stairs, or the embarrassment of crashing into store isles simply because they wouldn’t fit a wheelchair. At times it felt like a hammer taken to my chest with shame and embarrassment. It changed me.

I wondered at times if it was better to use crutches, or stay at home rather than go out in the chair and have my soul crushed by the way I was treated. The constant comments of “But you don’t look sick…” “What’s wrong with you?” and “You are so young, why are you in a wheelchair?” soon became the voices in my head. I have always wondered if when parents saw me in that chair, whether they feared their own child would “end up like me.”

I am now 18 and have been able to walk without aids for two years now, thanks to my condition’s natural fluctuation and a huge amount of hard work. I have since discovered a love for martial arts and spend my free time pole dancing at a local dance studio.

I can now say confidently that for me, using a wheelchair is definitely a mix of good and bad. It is up to you to decide whether the ability to go out with family and friends, go for a roll in the park, and go shopping (without being exhausted or in pain after) is worth more than the false feelings of defeat that may follow. It isn’t a sign of weakness to use a wheelchair; it is a sign you want to live a fuller life. Wheelchairs empower people, provide independence and enable people to have memories and experiences they would otherwise never have had.

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Thinkstock photo by kzenon.

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