I once was written to by a fan who asked if I ever was treated younger than I really was, because of my disability. Truth is, my face really hasn't changed that much from when I was really little, so the only reason I was periodically treated younger than I was, was because of my facial features and my small size, not because of my disability per se.
When I was 17, I was talking to a friend of my parents' who was asking me what class was my favorite and what I wanted to be as an adult. He found out my age when I said I was going to college in the very near future, hopefully to study something nutrition or Obstetrics related, which prompted him to ask how old I was. He was surprised, saying, "I thought you were 11 or something!"
It is not uncommon for people to show their sympathy or compassion toward me by saying, "oh, that sweet little girl, look how cute she is," and then approach me and look at my chair, continuing, "oh, sweetheart..."
When this fan wrote me she explained that her independence was limited not only due to difficulty with mobility, but also because people tended to jump right in and do things for her without asking. She said something similar to: "It makes me feel like I'm real little or something, and it's annoying, because sometimes people squeeze my cheeks and stuff." She proceeded to ask me for advice. I wrote her back privately as she preferred, and I have decided to write my response in a blog post in case anyone else is feeling the same way or going through the same thing.
I've had to have caregivers, family and friends assist me in nearly every task at one point or another in my life, and to this day I still receive assistance in dressing, hair-styling, transferring, opening doors, preparing meals, and occasionally feeding and bathing, as my strength varies daily. I've had to accept assistance even more so now with my seizures, and am with an aid nearly 24/7. From personal observation and experience, because of the extent of someone's physical mobility loss, it is always very easy for aids and loved ones of that person to become extremely involved in their care both privately and publicly, most especially if the care has been provided since the person was very little. If so, it can be very challenging for the loved ones and aids to transition into a more shadow-type role after years of being someone's primary source of help. This being said, the transition takes time and can not usually occur over night.
But for strangers, it's important to keep in mind that they are most likely "reacting" to their first glances and impressions, rather than stepping back and taking into consideration potential age, among other things, in which case they'd be "acting" from said standpoint. Because I brought up both perspectives here, I will provide my tips for dealing with both.
MY TIPS FOR EASY TRANSITIONING FOR LOVED ONES/PERSONAL AIDS & WHY:
1.) Know Their Intentions Are Good: at the end of the day, your loved ones and aids just want to make sure you have what you need, are blessed and comfortable.
2.) Know You're Not Alone: everyone family goes through a "leaving the nest" period, and the transition you'll be having with your parents is no different, except for the timing of it, perhaps.
3.) Have A Group Meeting: get your loved ones and aids together to discuss your desires. Always know it'll be easier for them to see your perspective if you give them a list of achievable goals and request they support you in reaching them within your ability. At the meeting, be sure to also bring up pros and cons of this decision, just like any college-bound student would. If it's something as simple as just wanting more privacy, tell them that you will ask for their help when needed, and think about ways of contacting them in the case of an emergency.
4.) Stress Confidentiality: you may have found that whoever assists you daily, has begun to ask "why" when you request their assistance or what to do something. This can become a great barrier to your gaining as much independence as you want, because they will be [usually] unintentionally budding in or becoming involved in areas of your life that do not concern them. If this happens, politely stress that you'd like to keep some things private or not have them involved in details of your day unless you consent. An example of this might be you wake up in the morning and your aid comes in to help you dress and you ask to wear that blue dress or that striped long tie, and your aid asks, "why? Why not this skirt? Or a tux? Or a bow-tie, instead?"
5.) Assign & Stick To Roles: when your aid starts asking why when you make a decision, unless it impacts the necessary way(s) in which they help you, it is not their business until you give consent. By assigning each aid/loved one a role, they will know exactly when you'd like their input or help, and when to step back. For example, your aid might be there to help only with your physical mobility, and they may decide to become involved in whether or not your schoolwork is done. Those are two different jobs. Simply state politely that they are there for physical mobility assistance only and not for academic help.
6.) Seek Help From Your Med Team: if your loved ones are still having a hard time transitioning into accepting your desire for more independence, ask members of your medical team for advice or see if they can sit in with you in your group meeting to help them better understand both your limitations and the things you're able to do by yourself. They can bring up suggestions for hiring caregivers and helping you direct the process, getting in touch with associated agencies and finding that appropriate balance of help and independence that fits to your liking and within your abilities.
MY TIPS FOR DEALING WITH "BABYING" STRANGERS & WHY:
1.) Know They Mean Well: it's very vital that you understand and remind yourself that their intentions are good, and that they do not mean to embarrass you or make you feel uncomfortable at all. They are trying to be kind and loving in the best way they know how
2.) Appreciate Their Concern & Care: know that they extend their sympathy not because they think, "poor so-and-so" necessarily, but because they have immediate care and concern for your life. Be thankful for this and return the love, also.
3.) Initiate Conversation: the more reserved you are, the greater a stranger will think you're younger than you really are. By starting a conversation with them you are saying right away that you have the intellect to be treated as your age and that you take interest in their life. This could also be a great time to explain how your condition affects your body so that they know ahead of time what you might need help with and whether or not you'd like their help if needed.
4.) Embrace The Royal Treatment: though it can be possibly annoying or frustrating when a stranger "helps" without asking first, try to remember that not everybody gets "waited on" everyday. While you don't enjoy having lack of mobility and would much rather be able-bodied, perhaps, you can let yourself appreciate being "spoiled", while staying humble and grateful for the service someone gave you.
5.) Give Back: this applies to both sections actually and is pretty self-explanatory. But whenever you can show your gratitude and appreciation to acquaintances or loved ones for their help, do so, in whatever way moves you. Blessing others with no expectation of receiving something in return is very rewarding. Also, by doing this, people will be greatly inclined to assist you and be friends with you for who you are on the inside.
You might also be interested in my tips for working with caregivers. Click here to read.