Hello ladies and gents, thank you for returning to another interview in my #DisabilityQ&A series! 🙂
Today I am featuring an interesting lady by the name of Mandy, I’ve seen her on social media, and I thought her to be an interesting person. She got in touch with me asking to participate, and of course I said yes! She really does have a fascinating blog, so after this interview, you should really go check it out 🙂
Enough rambling from me, I shall hand the reigns over…
Tell me about yourself:
Hi I’m Mandy Ree, I’m 30
and I live in Orlando FL. I am a freelance writer and blogger for my own personal blog Legally Blind Bagged, looking for employment in the meantime.
What hobbies do you have? I’m an avid toy collector and comic con enthusiast, Disney and 80’s kids culture is my specialty. I am also working on writing my own book “Lessons From A Power Ranger” which chronicles my journey of finding my voice in self advocacy with the help of my boyfriend with cerebral palsy.
Now we know the basics, can we learn a bit more about you?
What is the medical reason you have a disability?
I was born with Austimal Recessive Ocular Albinism, a rare condition that mirrors the visual impairments of a person with Albisim but without the other physical characteristics. Hence I’m very sensitive to light and am considered legally blind, but I don’t have the white hair or the fair skin. In addition, I also suffer from PTSD and Anxiety as a result of severe bullying growing up.
Which terminology do you prefer ? Legally Blind
Do you have a cane, Guide Dog or neither? I have a cane I only bring with me when I’m unfamiliar or semi dangerous, non pedestrian friendly places.
If you could extinguish your disability, would you? – I have always wished from the time I was little up until now there was a cure for my disability. What I wouldn’t give to be able to drive. The buses in Florida are horrendous.
For those who do not know much about your VI what can you see? The best way I can explain my vision to others is as if you took a bunch of crappy pixelated camera phone pictures from 2005 and surrounded me with them. I can see people and things around me, but can’t make out details, resulting in face blindness. Which explains my awkwardness in social situations.
How has your disability effected you?
Mentally, I’m drained. Having a physical disability makes me question my worth in this world. It seems like things that should come easy like getting a job or traveling take twice as long for me to accomplish, despite having the intelligence and work ethic to do so. Thankfully I have a lot of good friends from my most recent job experience at Disney and the comic con circuit who have taken me under their wing and have come to my aid on multiple occasions. I’m not alone like I was as a kid growing up in school, so I consider myself blessed.
Do you think your disability has made you who you are today?
I have become more open minded of other people and their needs. Ever since I was a kid who was mostly in mainstream classes, I was always curous as to what goes on behind the closed doors of “that other classroom” (Special Education). In my teen years, I started to volunteer my time in the Special Education classrooms, helping to bridge the gap between them and the rest of the student body before inclusion of those with developmental disabilities was a thing. I learned a sense of empathy and understanding towards others and grew a passion to help pass those values on to other people.
Is there a particular question you get asked often because of your disability? How many fingers am I holding up? Believe me, that shit gets old real quick.
What are the positives of having a disability?
Learning that there are perks in traveling. Florida has a special identification card program that gets paired with a reduced fare bus pass, which grants me a free lifetime bus pass. I also recently learned the perks of navigating the airport by admitting my disability, like being able to get in the handicapped line at the TSA check in and priority boarding on the plane. The only perk I don’t take advantage of is the attendants with the wheelchairs that take you to the gate, I would rather have those saved for someone who needs it.
What are the negatives of having a disability? The sense of independence. My parents are extremely overprotective sometines and I often feel like I can’t prove I can do things on my own without help. Not being able to drive is also tough considering that free bus system I use takes a ridiculous amount of time to get from one point to another. When I worked for Disney, it took me 3 hours to get home as opposed to 15 minutes down the highway. Thank God for Uber.
What would you say is a difficulty for you being VI / disabled? Oddly enough I am in the gray area between disabled and non disabled, making it hard to receive services like staff to help me travel and do some hard tasks, like sewing or filling out paperwork in small print. I’m classified as too high functioning to get help and it took me forever to get on Disabilty and Medicaid. Speaking of Medicaid, getting to utilize it is difficult, since not many doctors who take it are bus friendly for me to get to. Florida lacks greatly in services and I find it appalling. Being independent is hard, it’s even harder when your income is soley your disability check, as in the case for me since I lost my job two weeks ago. I honestly don’t know how people do it. I love I’m what’s called a Right To Work state so finding jobs are hard in a state where you can technically still be discriminated against.
As a person with a disability, what are the things you face on a daily / weekly basis that frustrate you?
*In your home- Minor tasks can be a challenge, like sewing or putting together furniture. I have been learning how to cook with my mom when she visits me during the summer, but cutting vegetables and measuring are still hard on me, resulting in food that resembles something out of Kitchen Nightmares
*outside your home Traveling by the bus system. Nuff said.
Are there any tips or tricks you use in daily life you’d like to pass on to another VI/ disabled person?
To help with finances, I use a white board to help me remember what bills I need to pay. I have a folder set up on my phone that has my bill paying websites bookmarked, since paying online is easier for me to do than paper. When going to new unfamiliar places, I put Google maps on and use that to let me know what stops I need to get off at. I rely heavily on that when I travel so I always leave portable battery chargers in my bag, just in case. I also tied a lanyard wallet to my purse that holds my bus pass so I can easily find it.
Do you use Assisstive technology in your daily living?
Google Maps with the speech on is a lifesaver. I also have a small digital magnifier that helps with small print reading.
What piece of advice would you give to someone newly diagnosed? Or going through a deterioration in vision / or mobility? It doesn’t hurt to admit you need help.
Any advice you’d like to give to a person with sight / no disabilities? Never give up on your dreams, no matter how outlandish they may be.
Did you seek out any specialist services / charities to help you and your family deal with your situation?
I received help from Floridia Department of Blind Services and have taken advantage of mobility classes upon first moving down here from Ligjhthouse of Central Florida. When I was in college up In Rhode Island, I learned to accept my disability and the basics of self advocacy from Advocates In Action Rhode Island, a great non profit that helps people (mostly with developmental disabilities) learn that they can lead a meaningful life and have a say in their care plans. I owe my life to them, for without them, you wouldn’t be reading this now.
Where can people find you out in the world?
*Blog – Legally Blind Bagged
*FaceBook- Legally Blind Bagged
Follow me on The Mighty
Anything you’d like to add my lovely?
On August 23rd at 4pn EST, I will be doing a live Q&A on the Mighty Facebook Page. I will also be speaking at the Advocates in Action Statewide Self Advocacy conference in Warwick RI October 27. More details will be shared on my Legally Blind Bagged Facebook page soon.
Thank you so much for participating Mandy, it was a very insightful read! I’m sorry to hear of the troubles you have faced due to your disability, and the lack of confidence that others have thurst upon you. It must be very disheartening! But good for you for powering through and proving how strong you are ! You are clearly very passionate about Disney and I hope your book goes well! Best wishes with it all, and keep in touch to let us know how it goes!
Please don’t forget to follow her links, and why not share the love? Leave her a comment, we would both appreciate it!
If you enjoyed this interview why not check out the others in the series so far?