AT/Software for High School andCollege Students with Disabilities

Having a disability or being chronically ill in college comes with many challenges: time management, memory, missing class, taking notes, studying, typing papers, reading textbooks and more! While this by no means will be an extensive list, here are some applications, software, and modifications that you might find helpful broken down by task. *Note: if you have an IEP/504/ College Disability Accommodations, some of these may be available to you for free through your school or may be covered under insurance so talk to your case managers!*

Time Management:

Timeglass (Free)List of three timers in a screenshot of timeglass app

This is a simple application that allows for the use of multiple timers at once, including multistep timers, repeats, customizable icons, and a visual timer. There is a limited feature free version on iTunes.

 
VisTimer Lite (Free)
screenshot of visual timer
Another simple visual timer application that has customization options such as display size, circle color, alert sound, and time warnings. Available in iTunes Store here for free with ads, upgrade available. Compatible with iPhone and iPad.

 

 

Things 3 ($9.99 iPhone/Watch)

I have tried many to-do list-esque applications over the years and while most start off great I find I stop using them after a week or so because they are too complex, don’t sync well between devices, or don’t help. Things 3 is the exception. It has iPhone, iPad, Apple Watch and iMac/Macbook compability, iCloud, Reminders and calendar syncing, it clean and easy to use and helps me immensely with homework, projects, things I need to buy, and my “remind me to think of…”. It is available here.

screenshot highlighting the upcoming feature of Things3 appscreenshot of start page of things3 app
Why I love it:
  • items are easy to move, categorize and mark as complete
  • a log book is kept for your completed items for the inevitable “oh shit I didn’t actually do that” moments
  • it syncs well with devices
  • it syncs with iOS Reminders, Calendar (including google), iCloud, and various devices flawlessly
  • You can set due dates, reminders, and assign a time to complete it
  • You can make subcategories
  • It helps a lot with packing and grocery lists too

Taking Notes:

Microsoft OneNote (Free)

Microsoft OneNote is part of the Office365 suite and is like Word, Powerpoint, and a Notepad combined. It offers the users to create subject sections, draw freehand, add tags such as “question” “to-do” or “follow-up”, simultaneously record and take notes, highlight, change page color, and more! Additionally, if used on Windows, “Learning Tools” is a free package download that includes features such as text-to-speech, focus mode, font-spacing, page coloring options, reading tools for low vision, dyslexia and other print disabilities, and more! I find OneNote to be the most useful one touch screen devices, especially for working out things like math problems that are hard to type out correctly or quick sketches. OneNote is also integrated with Office Lens (below).

screenshot of OneNote application               screenshot of One Note app

Notability ($9.99)

screenshot of notability app on ipad

I have only just started using Notability by Ginger Labs instead of OneNote and while the two applications have large amounts of crossover in terms of functionality, I prefer Notability’s design as well as ease of integration of pictures, better functionality of audio recordings, more functional highlighter, and overall more functional to use and sync.

Writing/ Reading

Wrise ($59)

Wrise is an accessible word processor for Mac that includes word prediction, text-to-speech, tags, and an export to iTunes feature. It is made by Assistiveware and is switch compatible. It also has tools to help people who struggle with similar sounding words, spelling, and reading.

Dragon Dictation (Naturally Speaking- $69.99)

Dragon provides one of the best speech recognition/dictation softwares out there. For those with fine motor issues, hypermobility in fingers, or who just prefer to talk rather than type, this is an amazing software. Dragon works with most common word processors (Word, Notepad etc) and can also be integrated into social media and web browsing.

Studying

Quizlet (Free)

Quizlet is a free study tool that allows the user to make e-flashcards, practice tests, and learning games all from a study set. The free version allows for pictures to be used on flashcards as well but you are limited to a small database. Additionally, study sets can be shared with classmates, worked on collaboratively, or you can search for pre-made study sets by other users. Some of the really beneficial tools of quizlet are: web based with app options, several different modes for learning from traditional “flashcards” to an adaptive learning course that prepares you for your exam. As someone with a learning disability, the ability to have the cards/ questions read to me when I want to is a major plus.

Crash Course Videos (Free)

These videos are fantastic! While you are limited to the topics they cover, I find them informational and think they do a great job of summarizing and presenting information without being too complex. These are great reviews for science courses, history, and other introductory courses. Also just fun to watch to learn something new. They even have videos on study skills!

Khan Academy (Free)

For more specialized informational needs, especially in math and science, Khan Academy does a good job of summarizing, providing examples, and covers more discrete topics.

Other

Office Lens (Free)

Office Lens is a free mobile application (integrated with OneNote) that gives you a scanner and optical character recognition (OCR) in one application — and for free. I use this app all the time!

Things it can do:

  • take a picture of a whiteboard at an angle, auto-crop it, and perform OCR (scans and converts characters to type)
  • take a photo
  • take a picture of a business card, crop it and perform OCR
  • save anything you snap to camera roll, OneNote, PDF, email attachment and more
  • scan and read a document to you
  • scan a document, perform OCR, send document to OneNote, then edit the document
  • compatible with VoiceOver and switch access
    screenshot of note and keeble keyboard

Keeble Accessible Keyboard ($24.99)

Another product of Assistiveware, Keeble is for anyone with vision issues, limited use of hands, dyslexia, and switch users this app is an accessible keyboard that can be added just like a foreign language or emoji keyboard and allows for customization of color, font, word prediction, quick phrases, auditory feedback (speaks what you type), Open Dyslexic font, ALL CAPS, and arrangement (ex. switch user making keyboard in frequency order as opposed to QWERTY).

 

 

Hope some of this helps!

College a cycle chart

 

 

Tips for an Inclusive Halloween

Halloween can be a real struggle for kids (and adults) with disabilities. Here are some examples of aspects of halloween that are not accessible:

  1. Walking around in the dark
  2. Being surrounded by people who look different than normal
  3. Sensory considerations with costumes
  4. Sensory considerations with house decorations (flashing lights, motion activated stuff, jump scares)
  5. Lots of walking/ rolling and physical accessibility of getting to house’s doors
  6. Talking to strangers (Trick or treat, asking for candy, responding to what your costume is)
  7. Food allergies or inability to eat
  8. Fine motor skills needed to grab candy
Here are a few adaptations/considerations that will help mitigate these challenges:

Food allergies/ inability to eat: Meet the Teal Pumpkin Project

The Teal Pumpkin Project is an initiative to include those with food allergies or special diets in trick-or-treating and to raise awareness. To participate paint a pumpkin teal (or print a picture and tape it to your door) and stick it on your porch. When you go out to buy candy, also buy some non-food items for kids. Examples: silly bands, party favors, bouncy balls, silly putty, vampire teeth or stickers! Party stores have lots of this stuff! Then, when trick or treaters come, simply hold two bowls and let the child choose! Believe it or not, there are even some kids who just don’t like candy (real bummer for Halloween).
Resources and further details found here! This year they have even added a map where you can tell the world your house is participating!

Trick or Treaters who don’t say Trick or Treat

There can be many reasons why someone might not verbal say trick or treat. They may be deaf, have anxiety related speech issues, be nonverbal, or just unaware that they are supposed to/why they are supposed to. Some may carry cards like this. Some may have a communication device. Some may just expect you give them candy. When in doubt, just give the kid some candy!

Decorating Your House

Keep in mind that for kids, terrifying is more likely to mean they will skip your house rather than bravely wandering forward. Be careful of extension cords as tripping hazards, poorly lit uneven surfaces, steps needed to climb to get candy ratio and other dangerous factors that might be hard to see at night, kids are unpredictable and hopped up on sugar. Also consider use of strobe lights, fog machines, and motion activated decorations as they may cause sensory overload, breathing issues, seizures etc. If you do want to use a strobe light, set it at a lower interval and it will be less likely to cause problems. Remember: its about the candy, costumes and fun…
Pro Tip: If you live in a house with more than 5 steps you might want to consider sitting down by the sidewalk during the main rush to hand out candy if you don’t want to get skipped!

Be patient and Enjoy!

Give that kid who appear to be indecisive a little extra time to look at his options, he might have allergies, motor planning issues, or just wants to get candy he actually likes instead of accidentally grabbing the stinkin pretzel bag. Don’t force children to speak to get candy. Give compliments on costumes even if you have no idea what they just said they were but also keep in mind that a kid not wearing a costume may have sensory issues, fabric allergies, or is scared of costumes. Also, if a teenager, adult, or other non-kid comes to you trick or treating don’t make them feel out of place, they’re participating and nothing wrong with being a kid at heart!

HAPPY HALLOWEEN!

Not being able to speak is not the same as not having anything to say! AAC Awareness Month

     Augmentative and Alternative Communication (AAC) is any form of communication that supplements or replaces speech. AAC can take many forms, from sign language to facial expressions, to printed communication books to high tech speech generating devices (SGDs AKA “talkers”). Basically, if it isn’t speech it is AAC! High tech does not always mean better and just like study habits and treatment plans, what works for one person might not work well for another, even with the same diagnosis. AAC users are of all ages, genders, races, disabilities, and literacy levels but they all have either no speech, speech that is difficult to understand, or have trouble forming fluent speech.

Remember that last time you lost your voice? I can almost guarantee you that you became frustrated at least once during that time period. Now imagine that you have an itch on the center of your back and you cannot speak. You’re only given this sheet of laminate paper.

You can’t sign, speak, or write. How do you tell me your back itches? Maybe … “I/me/me — help — turn…” then directional words until your communication partner happens upon the place your back itches??

Sounds “no want”? What? Not the word you were thinking of? Oh well… good enough. NO NO NO!

     Everybody should be given access to words (and symbols). Words are powerful and they make us who we are and allow us to connect with others. They surround us from the moment we are born to our very last breaths. Words are more than just basic needs and wants. Words are social, personal, creative and powerful. Nobody should have that kept from them.

Tips for Communicating with a person who uses AAC:

  • Be patient! One of the most frustrating things for me if being asked a question and halfway through your response they say something like, “oh, nevermind” or “don’t worry about it”. Similarly, group conversations can be VERY difficult when it takes you longer to respond. I often form my answer and by time I have finished my response is irrelevant. Don’t be offended if I tend to be quieter in groups, I am listening! I know it is hard to take the time to slow it down but I guaranteed you the AAC user will be very grateful!
  • Don’t limit to yes and no questions. It gets boring really quick. That being said, if an answer is needed quickly, it might be helpful to ask yes or no questions or give a few options to chose from. Ex. “Julie, the house is burning and I need to know, should we use: unicorn power, ninjas or rocks to stop the fire. Unicorn power? (yes/no) Ninjas? (yes/no) Rocks? (yes/no) Something else? (wait for response using AAC).
  • Presume competence. Talk to us at an age appropriate level and normal volume and rate (unless known to have hearing or processing issues). POP QUIZ! (all based on actual experiences)
    •  Billy is 40 years old Giants fan and uses a speech generating device. When talking to Billy you should:
      1. HELLO BILLY BOY! HOW————ARE———YOU?!
      2. Hi Billy, how are you? I saw the Giants won last night!
      3. *turns to Billy’s wife* Hi Betty! How are you? How is Billy doing?
      4. HI. My——-name——–is———S-U-S-A-N. NIIIIIICCEEEE TO MEEET YOU! YOUR CHAIR IS SOOOOOO CUTE!
    • If you answered #2, wahoo! You get it.
  • Advocate with us and for us!

 

Cool AAC Related Stuff:

Above: Video compilation project showing AAC users doing various activities and living their lives!

Above: An example of a SGD and computer controlled with the users eyes. For more information click here.

For a great website for AAC resources (use, teaching, awareness) click here (PrAACtical AAC)!

Examples of popular low and high tech systems:

 

 

Getting Hip with the Lingo

  • Augmentative and Alternative Communication (AAC): includes all forms of communication (other than oral speech) that are used to express thoughts, needs, wants, and ideas. We all use AAC when we make facial expressions or gestures, use symbols or pictures, or write (Source: ASHA)
  • Speech-Generating Device: Any piece of technology that turns user inputted text or symbols and turns it into spoken computer generated or synthesized voice. AKA a machine that talks for you.
  • Switch Access: using a switch to control your AAC device (like an automatic door switch). Switches can be activated using touch, light, sound, breath, or even tongue movements!

IDK MY BFF JILL

If you don’t know that reference it is from an 2007 phone commercial. Classic.

Anyways, I wanted to write a post about technology as assistive technology (AT) and more than just soul sucking relationship ruining screens that give you cancer. I will talk about how I use my devices as AT and why they are important for me and because of such, will be talking exclusively about Apple iOS devices because that is what I use. I plan to do another post about iOS as AAC devices and switch access eventually so this isn’t the longest most boring post ever!

I am a die hard Apple fan. I was a die hard Apple fan before I got sick and have fallen even more in love since then. First, I am in no way paid by or speak for Apple or anything, I don’t know why people have to say that but they do so I will! Second, I am not going to talk about Android because I know nothing of Android. I know they do not have as extensive built in accessibility features but they work better for some and that is fine. Lastly, I’m mainly going to be talking about why I choose Apple products as a person with a disability and what features help me or might be of help to those with similar conditions. So leggo my eggo (not paid by them either 😦 )!
First I’m going to talk about some settings/features that aren’t technically accessibility settings (other menus) but that I have found to be helpful. 

Visual Voicemail and Transcription

 

Phone>Voicemail
Apple’s visual voicemail system is one of the most underrated features in my opinion. For people with hearing/auditory processing issues, gone are the days of trying to remember which button to press to repeat the message…giving up and having to call VM all over again because you didn’t quite catch that middle part. New to iOS10 is a beta for automatic voicemail transcription. Now, when you click on a message and press play, the recording plays and an automatic transcription is written below. If it picks up a phone number it will be hyperlinked and a long press will give you options to call, message, or add number to contacts. For someone with Dyslexia this is a god send. I call/text wrong numbers constantly when I try to manually copy them down. Additionally, it is useful for those with hearing loss, auditory processing issues, or even if you want to scan the content in a meeting to know if it is urgent.

Find My Friends/ Location sharing in apps such as messages

At first I was not into having my mom be able to open an app and track my phone but it really has grown on me. This is definitely not the set-up for everyone (could be with someone other than your mom) but in times where I have gotten hauled off to the ER and they leave a VM on her phone saying “Julie’s in the ER”, being able to see which ER, if I am still there, or where I am if I am too confused to figure it out can be super useful. Again, not for everyone. 

SIRI

Siri is great and almighty electronic goddess, obey her.

EMERGENGY HOME SCREEN MEDICAL ID

(to set up) Health App>Medical ID> Edit
At the minimum please put in your organ donor status, name, and emergency contacts. It can be accessed by EMS/ED staff even if you have a lock on your phone. To view access, get to the lock screen with the number panel, click emergency in the bottom left, click medical ID.

ACCESSIBILITY SETTINGS (iPad and iPhone though most are available on laptop just different paths etc)

******There are so many– I’m just going over what I personally use******

Display Accommodations

 

Settings>General>Accessibility> Display Accommodations

 

Another brilliant addition to iOS10 was the Color Filters setting. This allows the user to tint their screen to their liking/need. This is a godsend for anyone with photosensitivity, migraines, color blindness, eye strain, and other vision conditions. It allows me to turn my screen a nice pinky-orangey tint that I would otherwise have to wear my specialty  indoor migraine glasses for. Another feature in this category is Reduce Whitepoint. This setting allows the user to reduce the intensity of bright colors on the screen by 25-100%. No longer need you be blinded by a white screen loading a webpage on ridiculously slow internet.
 

Speech

Settings>General>Accessibility>Speech
I wouldn’t be able to do much of my homework or social media without text-to-speech software due to eye strain, dyslexia, migraines, photosensitivity and reading comprehension issues. This is definitely one of my most undervalued helpers and it wasn’t until I was trying to read a textbook chapter on a different computer that I realize how much I rely on it and am assisted by it.
       Features/Settings:
  • Speak selection: when on, this will give you a “speak” button when you highlight text (next to copy/paste etc)
  • Speak screen: dragging two fingers from the top down will start speaking items on the screen
  • Highlight content: highlights words/sentences/words and sentences as they are read
  • Typing feedback: options to have keys/words/sentences you type to be read back to you
  • Voices: different synthesized voice options for speaker for gender, language, and accent
  • Speaking Rate: how fast the voice talks
  • Pronunciations: tell it how to say certain words like Ehlers-Danlos

Reduce Motion

Settings>General>Accessibility> Reduce Motion
This one is really helpful if you have vision triggered disabilities or just don’t want all the fancy graphics for things like opening and closing apps.

Switch Control and Assistive Touch

Settings>General>Accessibility>Switch Control or Assistive Touch
These are more specialized/complicated but amazing accessibility features I plan to do a separate post or maybe video for but I will just share their purpose now. Switch Control is for people with physical, cognitive, or sensory disabilities who have trouble accessing all or many of their functions or their iDevices via direct selection AKA touching the screen with their hand or a stylus. It is a built in program that allows the device to be controlled and used entirely via 1 or 1 switches. Switches can be the whole screen, head movements, external switches (wired or bluetooth), sip and puff (controlled by mouth movements) and more! For an example of switch access by someone who can do amazing things with it, watch the video! Assistive Touch is basically an accessible menu for people who have physical challenges performing actions like pinching to zoom.

Subtitles and Captioning

Settings>General>Accessibility>Media> Subtitles and Captioning
I actually only recently learned about this feature but if you like subtitles or need them, make sure you have this setting turned on and it will automatically turn on subtitles when available in apps like facebook, netflix, chrome etc.

Accessibility Shortcut

Settings>General>Accessibility> Accessibility Shortcut
Another relatively new feature this one can wear many different hats based on your needs. What is does is set a shortcut on/off switch for a selected accessibility feature by triple clicking the home button. On my phone, this turns on the pinky-orangey tint from my Color Filters settings. Since I only use that at night usually, it saves me a couple clicks turning it on/off everyday. On my iPad, I have it set to turn on Switch Control (more on that later) for when I use that.

Life Hacks: Spoonie Edition

   A friend of mine suggested I write a post about this and I live to please but really not sure how many good ones I can come up with. Eh, should be fun. Life hacks and good products for spoonies in no particular order:

  1. Invest in non-bathing bathing supplies
  • dry shampoo: greasy hair is gross, showering is an olympic sport sometimes and this stuff is the bomb.com. I recommend this brand. Also super great if you’re in the hospital and don’t want to wrap IVs etc
  • wipes: same purpose but for the rest of your body. Also nice to get ones with aloe so you don’t become all dried up. I like these.

2. Keep a to go back stocked in your room/car in case of apocalypse or other unexpected events.

basically if you don’t look like this you
aren’t doing it right
  • change of clothes with warm layered option (don’t forget extra underwear)
  • extra day of meds
  • snack if you eat food
  • flashlight
  • KT tape and medical tape
  • eye mask for sleeping/blocking light
  • wipes
  • long phone charging cord or cord with power bank thingy (can never reach outlets in ERs)
  • carabiners, duct tape and zip ties (1000 uses)
  • water
  • first aid kit

3. Glass water bottles

  • this is kind of a weird one but especially for POTSies, who basically need to constantly drink water to survive, this is a good one
  • why: easier to clean, better for putting ice in, won’t give you cancer or whatever BPA does to you, durable, taste better
  • also recommend getting one with a straw, easier to sip if not upright, and don’t spill as much if you’re a spazz
  • This is the one I have an LOVE! I’ve dropped it hundreds of times and the straw doesn’t require a lot of mouth strength to drink out of (#edsprobs)

4. PillPack

  • Pillpack is a mail order pharmacy that pre sorts and packages all your medications and supplements and ships them directly to you. I have been using them for about a year now and love it!
  • they call your docs for refills for you
  • they accept most major insurance companies
  • pay the same copays as you would for CVS, Walgreens, Safeway etc and that is it
  • great customer support and online portal
  • billing options for credit card automatic/not, FSA/HSA etc
  • medication remind app
  • don’t have to spend time sorting meds (or wrongfully doing so)
  • they do my supplements as well as RX


5. Medical alert bracelets/information

    • I have spent many years searching for the right type and run into the same dilemma often: classic medical alert (chain and metal with star of life) is recognized but limiting due to allergies, lack of engraving space, or constant changing information vs classier ID or EMR (electronic record) system might not be recognized by EMS.
      • NOTE: after many talks with EMS friends countless have said they’re only trained to look at wrists for IDs
    • I have implemented a somewhat overkill system but I think its finally working:

    • I use the MyID system for my EMR/bracelet/wallet card. It can be accessed by anyone with a QR reader, smartphone, computer, or phone. It is paired with an app/website portal that can be updated whenever and offers options to upload files, notify emergency contacts, write explanations of your rare and weird medical conditions and much more. I have found that of all the solutions for bracelets I have tried (flashdrive, traditional, wallet card, necklace), this works best. I also have a MyID wallet card in my wallet, and stickers on my phone case and school ID (like I said, overkill is best)
      • I have this one personalized and on the front is has
        “Medical Alert/ Julie LASTNAME/ “see back ICE for info”
      • Back has the access info, QR code, ID and PIN
    • I also have 3 silicone wristbands that give quick information on the same wrist. I do this because those are important for quick access, they draw attention to the other bracelet, and they paint the picture that I have multiple issues and they should definitely look at my EMR
      • “MAST CELL DISEASE/ I CARRY AN EPI PEN”
      • “LONG QT SYNDROME/ SADS AWARENESS”
      • “MEDICAL ALERT/ EHLERS-DANLOS SYNDROME”
    • BUT WAIT THERE’S MORE! At school, I also have a folder taped in plain sight on my dresser next to my bed labelled “EMERGENCY INFO” (useful for EMS, often gets passed to nurses too)
      • In it I have a copy of my
        • MYID info
        • drivers license
        • insurance card
        • any wishes in regards to my care
        • communication instructions (since if EMS are there I often can’t communicate well verbally

6. Mobility devices ≠ giving up ≠ bad

  • I started off using a cane, which I got from a drugstore, standing in line behind an 80 something year old man buying a cane and wanted to qualify my purchase with something like: “its a birthday present for my grandma…?”. It was one of the first times my disability became frequently visible and took a while before I got used to people’s questions, judgements, and my own stigma associated with it. But the cane wasn’t good for me so I moved to forearm smart crutches which people just assumed I had sprained my ankle or something and left me alone. I hobbled on those for about a year before my shoulders gave out. Then I got my rollator which I like too, but is still hard on my body. For me, transitioning to being a part-time wheelchair user was not very hard. It gave me more independence, less pain, got me places faster, and allowed me more options for bad days. It isn’t all magical though, people still judge or make comments, and there are still plenty of times I would rather just be able to walk or not have to worry about accessibility.
  • Most important lesson I learned in that journey was that I needed to do what I needed for my body, lifestyle, and pain levels. I’m not going to lie and say I don’t care what people think or that I’m somehow above it all, but for me the independence and assistance my chair allows me if definitely worth it.

All about my wheels (Nemo)

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So apparently March 1st is International Wheelchair Day, so I’m going to do another post about my wheelchair, wheelchair life, and probably some other stuff, so buckle up (get it…wheelchair seat belts)! Despite wheelchairs being a fairly common thing, I have found that most people outside the disAbility community have very little experience with wheelchairs other than maybe being pushed in the awful clunky hospital wheelchairs that time you were super drunk and broke your foot. What that translates to is a) a lot of interesting/awkward questions I get asked from all kinds of people when I am out in my chair. I, personally, don’t really mind them as I am an open person, but I feel like there are still lots of people who always wonder but never ask. Wheelchairs are amazing pieces of technology that are not “confining” nor “bounding”. They allow independence, freedom, and no one stays in their wheelchair 24/7. 

 

My Wheelchair FAQs and Comments:

Excuse the poor picture
    • What kind of chair do I have? 
      • I have a rigid frame Quickie GT Ultra-lightweight manual wheelchair with a Smart drive MX2 power assist wheel. I have a Comfort Company Acta-Embrace back (removable and foldable), and a Comfort Company Vicare VersaX cushion with a custom cover. I have quick release semi-pneumatic wheels/tires.
      • Most manual wheelchair users get their chairs from either Quickie, TiLite (does titanium chairs), or Colors. Almost all ultra-lightweight manual chairs are custom made to the user’s body, preferences, and medical needs (pressure reducing cushions, seat belts, etc). Most ultra-lightweight chairs are under 25 lbs and the lightest is around 9 (frame only). As a manual chair user, every bit counts in effort of pushing, loading and unloading, and portability.
    • Are there differences in wheelchairs?
Different back but whole chair
      • HUGE differences. First off, I will only be talking about ultra-lightweight manual wheelchairs, which is what most full-time chair users pick between that and electric. For manual chairs, one of the first decisions you have to make is whether you want a rigid or foldable frame. Rigid is durable and smoother ride, but foldable can be easier to get in and out of cars. Users also get measured for cushion dimensions, footplate position, backrest height and depth, backrest angle, “dump” angle (how far down your bum sits), center of gravity (positioning of axel in relation to wheels, important for wheelies), floor to seat height, size of wheels and much more! There are also lots that you get to pick based on personal preference like color of the frame, spoke colors, type of caster (small front wheels), size of caster, wheel type (sport, normal), hand rim type, and more!
    • Can you move your legs?
      • Yes, I personally have full use and sensation of my legs. I can’t remember the exact numbers but a good majority of wheelchair users have some use or sensation of their legs. There are many reasons people use wheelchairs, so if you see a wheelchair user’s feet move or see them walking, don’t assume they are faking it…odds are they aren’t.
    • Why do you use a wheelchair?

    • Several reasons, technically, I am what docs and PTs call a “non-functional ambulator”. All that means is that for me, walking is inefficient, painful, tiring, and often dangerous. Some of the reasons I use my wheelchair are: dislocations and subluxations of hips, knees, ankles, spine due to EDS, chronic fatigue, dizziness, poor coordination, lack of proprioception (being able to tell where your limbs are in space), weak veins and heart/ blood pooling issues, inability to walk long distances, and muscle spasms (to name just a few!).
    • When was your accident?
      • Yeah… I get this a lot. Not everyone who uses a wheelchair has a spinal cord injury and not all of us were in accidents, there are several conditions or reasons a person might use a wheelchair, some congenital and some not.
      • Some common examples (*indicate congenital conditions or potential to be)
        • Spinal cord injury
        • *Spina bifida
        • *Cerebral palsy
        • *Ehlers-Danlos Syndrome
        • Stroke
        • Multiple Sclerosis
        • Chronic Fatigue Syndrome
        • *Epilepsy
        • Amotrophic Lateral Sclerosis (ALS)
        • *Osteogenisis Imperfecta
        • Traumatic Brain Injury
        • Amputation
        • *Spinal Muscular Atrophy and Muscular Dystrophy
        • Dysautonomia
        • Much more! We are as diverse as the rest of the population and no two users are the same!
    • *screaming* HOW ARE YOU TODAY MAAM? 
      • Wheelchair≠ hard of hearing ≠ intellectual disability (even if it did, not the way to go)
    • At least your feet don’t hurt, I’m so tired of standing.
      • I get this one A LOT, especially at events. Yeah, my feet may not be sore but make no mistake, wheeling around is brutal on your shoulders, arms, fingers, and neck. Especially as an EDSer. Thankfully, my Smart drive (link to video demo) allows me to save spoons by automatically matching my current push speed until I tap my bracelet controller or grab my hand rims to break.
    • What is the worst thing about being a wheelchair user?
“Build a ramp they said. Its the law they said.”

      • Tie between grocery shopping, ice, or “accessible” buildings.
      • Grocery shopping is a pain because you cant reach 1-2 of the top shelves from a seated level, you need mad skills to push a cart and wheel (alternating hands and pushing) otherwise have to balance a basket, once you get home you still have to get them inside…
      • Ice sucks on wheels
      • Like of all the architectural feats and amazing designs and still like 80% of buildings have steps to get into them. Smh world.
    • How do you drive? (answered for people who don’t have leg function)
      • Manual hand controls or electric ones
Example of manual controls
      • Manual ones consist of two poles with clamps that go around the gas and brake and you push the gas one for… gas and the brake one for the brake. These can be easily removed and don’t permanently alter the car. This leaves one hand for steering. Many people have some variation on the “suicide knob” which attaches the wheel and makes it easier to turn with one hand
      • Electric controls have to be retrofitted with controls that work for the driver but most have a control setup for brake and gas and then the steering wheel
  • Here let me give you a push? or *grabs your push handles and starts pushing you without asking*
    • NOOOOO! Thank you for caring and being nice, asking is always fine. First off, it takes some skill to properly push a wheelchair on normal terrain, certain sized cracks might send you flying, ramps are hard to control speed on, and people have to be tactfully avoided. Second, NEVER touch, push, or grab a person’s wheelchair without their permission. It is terrifying, rude, and dangerous. I have had it happen many times and end up with dislocated fingers, some bruises, and occasionally damage to my chair.
  • Do you need help? “No, thanks” No really, let me help.
    • Similar to above, but believe it or not, we get along in the world fairly independently most days. Again, always okay to ask but NEVER ASSUME.
I love my wheelchair. It is my freedom, my independence, and my ticket to less pain. It is a piece of equipment, but also an extension of me. Treat it like you would treat me. Happy early international wheelchair day, I hope it is wheelie great! *badumchhh*
when a tree is more important than access

#Wheelchairproblems

       In honor of Bertha’s retirement (my current chair), and the arrival of my new chair (name TBD) I thought I would make a post about some of the pros and cons of being a wheelchair users along with some illustrious stories and bits-o-wisdom.

RIP Bertha Unkown-2016
Bertha fixed with 6 washers and a screw

Thanks are also due to Bertha for she has taken me places that otherwise would have been out of reach, and allowed me to get one step closer to being a normal college student.
A couple of days ago me and the boyfriend attempted to go visit the Air and Space Museum in DC. We drove and parked at the metro and metroed into DC. Someplace in the literal TWO blocks between the station and the museum, the screw that holds one of the small front wheels in disappeared. This means that the pin that goes through the wheel (essentially the axel) was not held in place. #howdoesthisevenhappen  (by the way this was Sunday….when it was snowing in March and cold as shit)  We had to call a Lyft driver, hope that they would have a car big enough to fit my chair, and get a ride to a hardware store a couple miles away (second time this has happened). Upon loading the chair, one of the spacers must have fallen out too. Thankfully the fellas at ACE Hardware in NW were happy to help us out. That being said, by the time this whole ordeal was over, the museum was closed so we headed back to VA. #wheelchairprobs

Pros:

  1. Good parking spots
  2. Nobody looks at your butt…nobody can see your butt
  3. Your shoes stay clean and nice for way longer
  4. You can get places really fast (as long as its downhill/flat)
  5. People all of a sudden become more chivalrous
Cons:
  1. You’re lower than everyone else
  2. You can’t always reach top shelves in stores
  3. Molehills really are mountains
  4. Sometimes even accessible places are stupidly unaccessible
  5. Clothes are not designed for the sitting figure