Karin, a woman in a wheelchair with long reddish-blonde hair.

When I was a little girl growing up with cerebral palsy, I had beautiful long hair down to my waist. But when I was about 7 years old, my mom said I had to cut it because it would be “easier for me and other people to take care of.” I was furious. I loved my long hair and raged against her for reasons I couldn’t quite understand. In the end, I got her to agree to let me have it shoulder-length. Throughout my childhood, I would put off haircuts as long as possible, and when I went to college, I started growing my hair again. I’ve worn it relatively long ever since.

Over the years, I have thought a lot about my hair. I wondered why my mother’s demand made me so angry, why I still feel hurt about it all these years later. And then I realized — as a person with a disability, my hair is more than just a fashion choice. It symbolizes something much more significant: my right to make choices about my body.

People with disabilities are often treated as if our bodies are not our own. This begins very early for those of us born with a disability, as we have to go through medical procedures we cannot consent to and may not fully understand. We are told that others know what is best for our bodies, and we have little choice about who touches us and how. Even though decisions about our bodies are usually being made with our best interests (or others’ perception of them) at heart, this loss of bodily autonomy can have a long-term impact on self-esteem and relationships.

Throughout our lives, we have to get help from strangers with the most personal tasks imaginable. I once tried to count up all the different personal care attendants I’ve had over the years. I stopped when I got to 100. For somebody whose job doesn’t involve a pole, an awful lot of people have seen me naked. It goes against my personality; while I don’t consider myself shy, I would be a very private person about my body if I could be. But I don’t have a choice in the matter.

Thankfully, many of the people who have helped me over the years were kind and caring. Some were indifferent. A few were abusive. Unfortunately, people with disabilities tend to be targets for abuse by people with bad intentions. I’ve experienced this several times in my life, including in a romantic relationship. I’ve learned from personal experience that abuse tends to begin with small violations of consent. These acts can be quite subtle, such as intentionally refusing to follow simple but specific instructions from a person about how to dress or care for them safely, and causing them pain and/or embarrassment as a result. The abuser generally cites “convenience” or “that’s too much work” as the reason for refusing to honor someone’s choices and needs, and may also make negative comments about their body.

In some cases, these actions are not malicious; they can stem from genuinely not understanding. Some individuals who are trained as “professional” caregivers may get the idea that the way they learned to provide care in school is the right way for every person. I’ve had to learn to stand up for myself and say, “No, that doesn’t work for me; this is the way I need to do things.” Most of the time, the person respects my autonomy. It’s when they don’t that problems arise.

Whether the cause is deliberate abuse or poor training, lack of bodily autonomy can slowly chip away at a disabled person’s self-esteem. It can make us feel guilty for needing help, for even existing. I know my body; I know what it needs, and I’ve taught dozens upon dozens of people with a variety of ages, strength levels, and body types how to help me. It baffles me that any person would come in and try to tell me how they are going to do things. Yet it happens.

On my recent, disastrous road trip with a caregiver who turned abusive, she showed early warning signs of refusing to help me in the ways I needed, even when I said it was causing me additional pain and fatigue. As we both became more exhausted and frustrated, she began to lash out emotionally with words and actions that pointed to what I believe is often in the minds of people who abuse those with disabilities: a particular, insidious form of ableism.

I apologize for the TMI nature of this next incident, but I want to make sure people understand the reality of my life. During the trip, the caregiver was helping me to the restroom. I had just gotten my period, but already had the needed protection in place. When she saw it, she looked repulsed. “I’ve never taken care of someone on their period before,” she complained. “Most people like you do something about it.”

People like me? I was completely shocked by her words. To make sure I wasn’t misunderstanding, I asked her to clarify what she meant. She said, “Well most disabled people take a pill or shot or something so they don’t get it.” I was so floored at that moment, I couldn’t express what I really wanted to say. I rattled off something about having tried various things and they didn’t work and caused problems for me, hoping she’d let it go. She didn’t. She angrily responded that I should “try more options” and “try harder.”

I was horrified. What kind of woman humiliates another woman for having her period? She seemed to be saying that as a woman with a disability, I should be expected to alter my body just to make it more convenient for my caregivers. Her concern wasn’t for my well-being; I wasn’t dealing with cramps or PMS, and she persisted in her demand after I told her my body reacts badly to birth control pills. She wasn’t new to caregiving; she told me she had cared for several other people before, though they were mostly seniors. And yes, she claims to be pro-choice — it’s all over her Facebook page. But it seems her respect for women’s bodies and choices does not extend to those of us with disabilities.

I have encountered many people working in health care fields who are deeply ableist and believe people with disabilities should limit our lives because our existence is inconvenient. They body shame us, and expect us to let others choose when and how we will have basic needs met. We are expected to respond with subservient gratefulness for whatever help we are given, even if we are treated disrespectfully. This attitude is deeply ingrained in the health care system. For example, although I try to avoid using home health agencies, I have had to do so on occasion when I was short of help, moving, or had an emergency. I found myself in that situation after I got away from the abusive caregiver mentioned above; I had help coming my way, but she wasn’t there yet. So I called an agency and asked for a female caregiver — someone physically strong enough to do transfers, able to drive, and who likes dogs. When I said this to the scheduling worker on the phone, she reacted as though I had asked for something extraordinary. She did find someone for me — and that person was great — but apparently she had to make several calls.

When the bare basics of my life are considered extraordinary, I believe there is a real problem with ableism in our health care industry. I feel like many people 18-50 years old can meet all the requirements I asked for, if given proper training on how to do transfers. I guess it’s no wonder the awful woman I traveled with had managed to work as a caregiver for years, with such low hiring standards at agencies. And of course, poorly trained workers aren’t taught to respect their clients with disabilities and are more likely to be abusive.

People who have worked in medically-oriented caregiving settings often don’t know how to react to someone like me. I live my life as I choose. If I want to do something, I figure out a way, and I don’t let my disability hold me back. I honestly don’t care if people find aspects of my disability inconvenient — I do too, but I’m not going to accept less from life because of it. I strive to be kind and treat those who assist me with respect, but I don’t respond with fawning gratefulness every time someone shows up and does their job. I expect people to work hard, behave responsibly while still having fun, and most of all, respect my body and my choices.

I wish supporters of women’s rights would recognize that for women (and men) with disabilities, pro-choice goes beyond abortion. My body, my choice means the right to be considered a whole woman even if you have a disability. My body, my choice means women with disabilities deserve equal access to gynecological care, and should not be pressured or forced into suppressing our bodily functions or being sterilized, as hundreds of thousands of us were during the height of the eugenics movement. My body, my choice means the right to have children if we want them, and to have our gender expression and sexuality respected whether we are straight, pansexual, or lesbian. My body, my choice means the high rate of domestic violence, sexual abuse, and caregiver abuse against people with disabilities must be acknowledged and addressed with the same dedication as violence against women without disabilities.

Pro-choice means the right to make choices about every aspect of your body from your hair down to your toes. I often see women with disabilities wearing frumpy, ill-fitting or stained clothes, and of course with short hair. Now granted, who among us hasn’t run out to the store looking a bit scruffy… but I often wonder if that’s really how they would like to look every day. Are they being given choices and support to buy fashionable clothes, wear make-up if they wish and have a hairstyle they like? Basic rights most women take for granted are often denied to us. That needs to change.

A friend and former assistant of mine has a very cool tattoo. It’s a braid of hair, shaped into a heart. In the center are the words “Long hair. Don’t care.” The tattoo symbolizes doing what is right for your body and your life, even if others may disagree or judge you for it. It’s a right we all should have, and one I continue to defend with my beautiful long hair and every other choice I make each day I live on this Earth with a disability. I hope if you know me, or if any other person with a disability is part of your life, you’ll defend our right to live as we wish. And when you say you’re pro-choice, make sure your respect for women’s bodies and choices extends to those of us with disabilities, too.

Follow this journey on Free Wheelin’.

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Dear Parent,

I don’t know if you remember me or not. The moment our paths crossed was probably so split-second that you never thought twice about it, but it still warms my heart.

It was a beautiful, not-so-hot summer day and I loaded the kids up to go to the park. The park we frequent is about 20 minutes away, and it is worth every minute of the drive. You see, this park is the only one in our area that offers wheelchair users like my son the ability to play on almost every piece of equipment. Because my son is 2, the park is not only a play experience but a learning experience as well. You see, for every wheelchair ramp, there are stairs on the other end of the equipment for the non-disabled users.

My son Luca comprehends that his wheelchair allows him to get from Point A to Point B, but he has a hard time grasping that a wheelchair cannot go up the stairs. Like any other 2-year-old, he doesn’t like being told he can’t do something the moment he wants it. He pointed to the stairs, and I acknowledged that I understood him, but redirected him to the wheelchair ramp.

As he finished his episode of frustration and we slowly made our way to the ramp, we met you and your daughter walking down the ramp. As a bit of encouragement for my son, I pointed in your direction and said “See! That’s where we go to go play.” Without any hesitation, you promptly encouraged my son and “Come on buddy! This way! Keep going!”

All I could do was crack a smile. Honestly, I did not think you were going to say anything. I was expecting a simple smile or no acknowledgment at all. But you did the exact opposite. You encouraged my son to use his wheelchair up the ramp.

It is not easy as a parent when you have a strong-willed child, and my strong-willed child is on wheels. From one parent to another, I thank you for being another voice on the sidelines cheering my son on his journey. No victory is too small in our world.

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Thinkstock photo by Jaren Wicklund.


Recently there has been a significant increase in hate crimes and bomb threats across the entire country. Minorities, including people with disabilities, are especially at risk not only for attacks and threats, but also for the stress and anxiety that can result from seeing what is happening around us. People with multiple minority status (i.e. people of color + disability, LBGTQ + disability, Jewish or Muslim + disability, immigrant + disability) are particularly vulnerable.

The one-in-five people in America who have a disability need proactive and systematic planning in order to ensure they have the same safety and security as everyone else.
Key issues and steps include:

Anxiety, Addiction and Emotional Health: Even for people who do not have ongoing mental health issues and who are nowhere near bomb threats or hate crimes, the content of social and other media can be extremely frightening. Emotional reactions can include feeling physically and mentally drained, having difficulty making decisions or staying focused on topics, becoming easily frustrated on a more frequent basis, arguing more with family and friends, feeling tired, sad, numb, lonely or worried, and experiencing changes in appetite or sleep patterns.

Most of these reactions are temporary and will go away over time. It is important to try to accept whatever reactions you may have and to look for ways to take one step at a time and focus on taking care of your needs and those of your family. Keep a particularly close eye on children and people with addiction issues (including Internet addiction) who may need extra supports.

Some things that can significantly help your mental health are to limit your exposure to the sights and sounds of stress, especially on television, the radio, newspapers and social media, as well as eat healthy, get ample sleep and stay personally connected to family and friends. Stay positive. Remind yourself of how you’ve successfully gotten through difficult times in the past. Reach out when you need support and help others when they need it.

Most major cities have a Jewish social services agency, which will help people of all faiths. Additionally, the Red Cross’ Disaster Distress Helpline is free and 24/7 for counseling or support. You can call 1-800-985-5990, text “TalkWithUs’ to 66746 or utilize Red Cross Mental Health Teams.

Another resource is the American Counseling Association. They have fact sheets you can download on mental health services, including post traumatic-stress disorder and crisis counseling. Moreover, if you are feeling suicidal, you should reach out immediately to www.suicide.org.

Create Your Evacuation Plan and Support System: Have you been in touch with your local
police station and fire department? If not, do it now. A part of the services they provide is to keep track of the needs of residents with disabilities in times of threat or disaster. For example, if you use a wheelchair and live or work in a high-rise building, the fire department should and will literally come out for free to meet with you and create an individual plan for you in case of a fire or other emergency.

If you have sensory, cognitive or other issues, it is vital for the police and fire department to know how to successfully support you in a time of crisis. Hundreds of Americans with disabilities are killed by police each year because the police have not been trained to recognize and address mental health or other disability issues. The time to have those conversations and training is before a disaster strikes. Because this issue is so important, RespectAbility has conducted a free webinar, which you can find on our website: Special Conversation With Special Olympics About Violence, Police Training and People With Disabilities.

When it comes to evacuating people with disabilities, you must plan in advance. See the National Fire Protection Association’s terrific Emergency Evacuation Planning for People with Disabilities (June 2016).

Have a “To Go” Kit Ready: If your building is evacuated, you will want to have several things handy. For example, you will want to have any medications you may need to take as well as your phone and charger, glasses, hearing aids and extra batteries if you use them, supplies for a service animal you may have and more. You also will want to let your loved ones, who might worry if they see a threat on the news, know you are OK. You can do that through phone, email or social media. There are terrific resources available through FEMA.

If you use a communication device, mobility aid or service animal, what will you do if these are not available? If you require life-sustaining equipment or treatment such as a dialysis machine, find out the location and availability of more than one facility. For every aspect of your daily routine, plan an alternative procedure. Make a plan and write it down and print it out. Keep a copy of your plan in your emergency supply kits and a list of important information and contacts in your wallet.

Create a Personal Support Network: If you anticipate needing assistance, make a list of family, friends and others who will be part of your plan. Talk to these people now and ask them to be part of your support network. Share each aspect of your crisis/emergency plan with everyone in your group, including a friend or relative in another area who would not be impacted by the same emergency and can help if necessary.

If you have a cognitive, intellectual disability, or are deaf or blind, be sure to work with your employer and other key contacts to determine how to best notify you of an emergency and what instruction methods are easiest for you to follow. Always participate in exercises, trainings and emergency drills offered by your employer or landlord.

Our nation is at its best when we are welcoming, respectful and inclusive of all. As many people are, or feel, at risk, we must show exceptional love and friendship to those around us.

Special thanks to Elliot Harkavy for ideas and contacts that contributed to this piece. 

Learn more at RespectAbility.

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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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