Welcome back ladies and gents to another installment of my #DisabilityQ&A series.
Today’s interview is brought to you by the lovely Codee, we met on twitter and having been interacting for awhile. She asked to join our Facebook group purple elephant and has become a Great friend and supportive member of the community.
Coddee’s story is not one I’ve come across before but it is truly fascinating to read.
Over to you 🙂
Tell me about yourself:
Hi. My name is Codee. I am 34 years old. I was born and raised in England. I have lived in the Netherlands for almost five years now.
What is your job?
The unpredictable effects of my illness, such as tiredness and pain and the inability to travel independently means I’m unable to work.
What hobbies do you have?
Music – I play keyboard. Before my muscles started deteriorating, I could play drums and I’m learning guitar.
YouTube – I have a talent for being able to learn songs by listening and copying. So I make keyboard cover videos and put them on YouTube. I also upload informative videos, about my illness and the disabilities that come with it. Vlogs, unboxing videos and reviews.
Computers – Although I’m a Mac user and love it, I know a PC inside out and love to help others solve technical problems when my health allows me to.
Language – I have a talent for learning language. I speak fluent Dutch. Am learning German and can use some British, Dutch and American Sign Language.
Now we know the basics, can we learn a bit more about you?
I’ve got a quirky personality. Like to make jokes. Always try to look at the positive side of life and am becoming a Flip Thinking genius. I’m apparently good at writing poems. Not so good at making friends, but I like people. So I do try.
What is the medical reason you have a disability?
My Mom contracted Rubella, also known as German Measles, during her pregnancy. If it’s contracted within the first 12 weeks, it has a very bad habit of causing health problems and disability before the baby is even born. So I was born with . This is a cluster of health issues and disabilities which are related to each other due to the effects of the Rubella virus. I’m legally blind, have a heart condition and have a small amount of hearing loss. Muscle weakness, urine incontinence, glucose intolerance and a whole list of other things became part of the package later in life.
Do you refer to yourself as a person with a disability? If not, why not?
No, I refer to myself as a CRS Warrior. Congenital Rubella Syndrome is the illness that keeps on giving, so I keep fighting. I feel the word Disability is associated with being ‘incapable’. So I prefer to use the word limitation. I can’t do everything, certainly not in the way that most people are used to. But I’m not incapable. I’m just limited.
Do you tell others about your disability? Or do you prefer to keep that to yourself until you are comfortable with the person knowing?
Even when I’m not sitting in my wheelchair, it’s clearly visible by looking at my face that something isn’t quite average. My eyes move uncontrollably and I mostly wear dark glasses, even on a cloudy and rainy day. I’m comfortable with this and will willingly answer questions from strangers. I only wish that they’d ask the questions instead of just staring. I can’t see the stares, that bugs me. It means I’ve missed many opportunities to help people learn something and maybe even feel more comfortable being around me.
Do you use any mobility AIDS such as a wheelchair or walking stick?
Yes, a wheelchair. I also have crutches and a quad cane. Knee braces and high top trainers also aid in good mobility.
If you could extinguish your disability, would you? – If not, please explain why.
If I didn’t have CRS, the path I’m travelling would be very different. I’d have different qualities and talents. More importantly, I wouldn’t have the same friends and family. The people in my life are very important to me and I never want to change that. I like myself the way I am. I have learned a lot from being this way. Though I would like to learn more, I wouldn’t change anything about me. However, there are Rubella vaccinations which when taken seriously and used correctly, can prevent CRS. I’d like to see less children being born with it. I feel it’s not necessary for children to have to be born and live the way I have and do.
For those who do not know much about your disability how does it affect your mobility?
I’m a legally blind wheelchair user with a lot of muscle weakness. I’m limited to how much I can stand and walk as it quickly causes pain and tiredness. I must also take care of my body posture and ensure it’s good. Doing simple things like bending forward to get the mail from the doormat, or reach something from a low cupboard, can cause my pelvis to fall out of place. This is obnoxiously painful to the point where I’m almost immobile and can take up to 3 weeks to recover from. The combination of not seeing and using a wheelchair makes going outside alone impossible. I always have to take a sighted guide with me.
How has your disability effected you?
As mentioned above, it can be physically challenging. Trying to prevent your pelvis from falling out of place is harder than you think. It limits you to the daily tasks you can perform. Luckily I hate household chores, so I don’t complain if I need help to do them. haha. Being unable to go out independently makes it difficult to find friends. Even if I could attend social events such as a party, I would chose not to. The combination of vision and hearing loss means it costs a lot of energy to follow and understand what’s happening around me. Therefore, most of my socialising is done online. It’s common for people who struggle with social isolation to suffer with depression and anxiety. That combined with all the health challenges and limitations, which never seems to stop coming, can cause even more pressure. I’ve had my fair share of anxiety and depression.
Do you think your disability has made you who you are today?
Yes. I believe I’m more patient, open minded and have a great ability to empathise with others due to CRS. It’s taught me a number of life lessons I would otherwise never have learned. I appreciate those experiences.
Is there a particular question you get asked often because of your disability? If so, please explain below.
There are two that I have been asked multiple times.
Why do your eyes move around like that? Well, I have Nystagmus which is caused by neurological abnormalities. I have very little control over the muscles in my eyes. Therefore they like to dance. Sadly they both dance on their own. Shame they can’t enjoy a waltz with each other.
Which aspect of CRS is the one you find most challenging? Honestly, the sight loss. It has deteriorated a lot in the last 2 years. I had a lot of difficulty coming to terms with that. The hardest part is knowing that my eyes are a ticking time bomb. They’re prone to being affected by retina detachment. Which could be triggered even sooner by hitting my head. If this happens, it will leave me totally blind. An operation won’t fix it. I’ll only be able to get help with the pain it might cause.
What are the positives of having a disability?
The most important positive is the learning experience I have encountered. I’ve had to learn to do a lot of things in different ways that most people could never even imagine being possible. I feel like I’ve achieved a lot this way. I’m very proud of it.
There are other advantages:
Wherever I go, I always have my own chair.
I’m never freaked out by the military walking around an airport or train station with their big weapons.
I can’t judge someone by the way they look.
I never have to read a book, newspaper, my computer screen or phone. A cool digital voice reads everything to me. If I’m very lucky, one of my sisters reads to me.
Scary movies don’t scare me. I can’t see the visual effects.
I often get to sit directly in front of the stage at a theater show or concert.
What are the negatives of having a disability?
There are so many misconceptions about disability and what it is, that it’s hard to find understanding and acceptance.
For a lot of disabled people, it’s hard to find balance between living a life, and earning a living.
What would you say is a difficulty for you being disabled?
Trying to explain my disability related needs and wants to other people.
Trying to explain to sighted people exactly what I can see.
As a person with a disability, what are the things you face on a daily / weekly basis that frustrate you?
I wouldn’t say I get frustrated on a daily basis. Definitely weekly. With some things, less than weekly. However, they’re equally as frustrating.
Picking up mail from the doormat.
Trying to reach something from a low storage area.
Being unable to go outside independently. The combination of wheelchair and sight loss makes that impossible. I don’t have the co-ordination to control an electric wheelchair, so I can’t get a guide dog. This means I need a sighted guide to go everywhere with me.
Being unable to simply go on vacation. Or even stay a few days with my sister when I want to. My muscle weakness means I’m required to sleep in an adjustable bed as laying flat is painful. Adjustable beds aren’t available at most vacation destinations. You have to make sure the place you want to stay is willing to let you have one placed. I also have to have one placed at my sister’s house if I want to stay there. Both cost money, time and planning.
Are there any tips or tricks you use in daily life you’d like to pass on to another disabled person?
If you have difficulty reaching things but have enough eyesight, get a helping hand. It’s a claw like object with a handle you can pull to open and close it so that you can reach things from awkward places.
A smart phone is probably one of the best things you can own if you have a disability. I’ll explain more below.
Do you use Assistive technology in your daily living?
I have a portable video magnifier. I don’t use it a lot. However, it’s useful if I need to read instructions on the back of a food package.
My Orion Webbox, is a Linux based system that provides easy access to certain online content such as Newspapers, talking books, the tv guide and it can even read subtitles from certain tv shows. It’s way much easier to access this content through the Webbox than it is to do it on a smart phone. Unfortunately, as far as I know, it’s only something available in the Netherlands.
My iPhone is my second brain:
I use the stock reminders app to remind my of everything. From taking medication, to making sure my guinea pig has fresh water.
The stock calendar app allows me to manage all my appointments. I share the calendar with some family members. So I can also see their appointments and when they’re available to help me. They can of course also see mine. This avoids a lot of mis-communication.
An app called TextGrabber allows me to read snail mail and instructions on food packaging. This is done by taking a picture. The app then converts the text to a digital format that can be read with VoiceOver. I believe you can also do this in the notes app in iOS11, I haven’t tried it yet though.
An app called VoiceEyes describes objects to me that I don’t recognise or can’t see clearly. It uses the camera to scan the object and then it provides a description.
I also use an app called Vitility in combination with my Diamond Mini bluetooth glucose meter. I can use the meter to measure my glucose level. The meter then transfers the data to the app so I can check out my reading with VoiceOver.
An app called Terraillon works in a similar way with a set of bluetooth kitchen scales I have. If they’re connected to the phone, the measurement that the scale reads, can be accessed with VoiceOver via the app.
Dictation in the notes app, means I can say something to my phone, it will convert it to text so that a deaf friend or family member can read it when in a situation where I can’t be understood when speaking.
I’ve even been using an app called Gebaren to learn Dutch sign language. The possibilities are endless.
What piece of advice would you give to someone newly diagnosed? Or going through a deterioration in health / or mobility?
There’s always a way, even if it has to be done differently. The thing that you’re most afraid of, is the least likely to happen.
Any advice you’d like to give to a person with no disabilities?
Be open and accepting. Don’t be afraid to ask questions. I’d much rather give you the opportunity to learn something, than have you feel uncomfortable because my appearance or disability is confronting. The more you understand, the more you’ll realise that it’s really not that bad. ‘What the heck’ is a perfectly normal reaction to something that you’ve never seen before.
Did you seek out any specialist services / charities to help you and your family deal with your situation?
When I lived in England, I made use of services from the RNIB, Occupational Therapy, Wheelchair Services and the community nurse. Now I live in the Netherlands, I am under guidance from Bartimeus. This is an organisation similar to the RNIB. It also includes a full rehabilitation service. With occupational therapists who specialise in different areas and fully trained psychologists. I’m thankful for their help and continuing support. They’ve really helped me to gain a positive outlook on life.
Where can people find you out in the world?
FaceBook: I have a closed support group for everyone affected by Congenital Rubella Syndrome. Warriors, Carers, People in professional care, family and friends: http://bit.ly/crslife
Anything you’d like to add my lovely?
Smile! It confuses people.
There are no problems. Only Solutions.
Life is not about waiting for the storm to pass. It’s about learning to dance in the rain.
Thanks very much for reading. 🙂
❤❤ Thank you so much for taking the time to be interviewed Codee. I absolutely love your positive attitude and zest for life even though life has thrown you a curve ball. I hope whoever reads this agrees with me and has learnt something new along the way ❤ ❤
I hope that my readers got as much value as I did from your Q&A
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