Standing Up For Your Rights

I haven't really touched on standing up for myself in terms of my rights as a person with a 'disability' since starting this blog almost five years ago now. Partly due to the fact that I am really bad at doing it! 

My most current problem is with studying at university. I am due to be completing my final year of psychology this year and have been having issues with the uni I am currently enrolled in (which is a different uni from my previous studies). Since I am still in the negotiation process I will not name them just yet and hope they do the right thing and support me.

Now I study via distance education as it's easier for me with my sight, with working and with life in general. As a post graduate, I don't really want to be on campus but rather spending the time furthering my career. Even though I am studying distance my course has residential schools as a component, four lots in total over the year. The campus is not local to me, it's about a three hour drive from the city, which of course I can't drive, about a seven hour train ride (into the bush) or a small plane flight (although the airport  is closed at the moment). 

My issue stems from two things - my vision and my anxiety. It is hard for me to travel with my vision and there is no way I feel comfortable getting a train to somewhere I have never been on my own then somehow navigate to the campus and to a hotel. I can't even read a sign! I'm still new to this whole vision impaired experience and travelling on my lonesome is not something I feel comfortable with yet. I'm a small girl and haven't learnt kung fu (but don't worry I'm in the process of that) so I feel very vulnerable. And I'd have to do it four times over the year. I could get someone to take me but frankly I don't have anybody who could take weeks off work to spend in a country town while I sit in lectures for a course I'm supposedly doing through distance education.

So you'd think I have a fairly good argument to be supported to participate in another way right? Well apparently not. I've had numerous comments from the disability officer that they have another student who is 'fully blind' and goes on campus and why can't I study at another uni? Oh ok, too hard for you so palm me off? As for the 'fully blind' comment (said more than once), can you be any more condescending? You don't know my experience or my history, you know nothing about me! You don't know how I cope or all the effort I'm making to deal with my diagnosis and live a normal life! 

I was on the verge of giving up. I had a chat with someone who is involved in disability research and she gave me some useful resources to support my case and present to the uni. One of which was the UN Convention on the Rights of Persons with Disabilities  which Australia is a signatory and must abide by. The main points to note in regards to education is that every person has a right to education and 'reasonable adjustments' should be made for a person with a disability.

I was still wary of picking a fight as such with the uni, and was not keen for any confrontation. Then I thought, I have to be more assertive and fight for myself. So I put together an email quoting the above and specific guidelines relevant to psychology and sent it off. 

The response I have gotten so far is.. well iffy. I'm not really sure where it's heading. Regardless of whether I succeed at least I can say I tried and I made others think of the individual needs of someone with a disability.

If you are in the same situation don't give up, try your best to be assertive and stand your ground. If you get really stuck there are disability advocates who can help and speak on your behalf. We have the same rights as everybody else and organisations need to be made aware of the different needs which are necessary for success. 

Updates on the outcome of my situation to come! 

Real People # 1

In the coming months I will be sharing stories of others living with Stargardt's and other retinal dystrophies. These people have all inspired me on my journey and no doubt will inspire you too!

First up is Jenna!

Jenna Lawson, 22, Florida, United States

What is your diagnosis and how does it affect you?

In March of 2011, I was diagnosed with Stargardt disease, a type of retinal dystrophy. This disease impacts my central vision and, at this point, I have no central vision left. When I first began losing my vision and I was told that neither glasses nor surgery would fix my problem, I was very scared and upset. At that point in my life, I was a year out of high school, I wasn't going to school (even though I really wanted to), and I was trying to enroll in a dental assisting program that I thought would bring some direction to my life. I had successfully enrolled in a program and was due to start in a few days when I received the news about my eyes, so I had to withdraw from my classes until I figured out what was happening with my vision. In addition to feeling scared, I felt angry because all I wanted to do was get my life on track, but all of these events were preventing me from doing so.

I, thankfully, received an official diagnosis two months later, and I remember thinking: "This is my life now. There is no looking back." I was so relieved to simply know what I was dealing with that acceptance came very easily. I was so eager to pursue my life that something like Stargardt was not going to stop me. Funny thing is, Stargardt disease turned out to be one of the biggest blessings of my life because, not only did it enable me to attend school, but it helped me realize my true strength and tenacity. It's strange how something that, at first, seemed so negative turned out to be such a positive and motivational experience.  I definitely encounter challenges from time to time, but I have accepted my eyes for what they are and this alone has given me great peace.

Where do you currently work or study and how do you find it with your vision impairment?

Currently, I attend the University of Central Florida, and I'm pursuing a Bachelor's in Social Science Education. My goal is to become a history teacher. Before UCF, I attended Weber State University in Utah. When I lived in Utah, I walked three miles to the nearest bus stop, in the cold and the snow, and then rode the bus for an hour to school. I kept getting sick because of the cold and I hated the long commute, so I moved to Florida where I'm able to wear sandals and shorts almost everyday. I take classes online, and I also take classes at a location that is about three miles from where I live. I ride my bike to and from this location, rain or shine. School is my job, at the moment, but I spend a lot of time volunteering at an elementary school. I ride my bike there, as well, because it's close to where I live. If I have to go anywhere else, like the grocery store or the dentist, I have to have a friend or family member take me.

What hobbies do you have?

I love to paint and draw, write stories, read, spend time at the beach, hang out with friends and family, watch movies, travel,  study world history, and belly dance. I continue to enjoy all of the activities I did before I began losing my vision. I started belly dancing about a year ago because I wanted to improve the health of my spine (I spend a lot of time hunching over notes and textbooks because I have trouble seeing).

What has been the biggest hurdle you have faced?

The biggest hurdle I have faced has been transportation. Transportation has been the most persistent and frustrating problem. In the United States, there is sort of this expectation that anyone 18 or older should be largely dependent on themselves. Lack of transportation makes it so you have to depend a lot on other people, and a lack of transportation can also limit your access to job opportunities. Learning to accept a state of dependence is difficult, and it can sometimes feel demeaning when you live in a culture that places so much emphasis on independence and "finding your own way". Not being able to provide transportation for yourself also shows who your true friends are; those that truly care will undoubtedly find the situation tricky, at times, but they will be there to support you no matter what, whereas others will see you as a burden and will disappear from your life. I take this hurdle one day at a time. As far as relationships and job opportunities go, I have come to view my transportation issue as a filter. In other words, opportunities and relationships will continue to be in my life, regardless of my eyesight and the challenges I must face on a daily basis.

What's the best advice you'd give to others in this situation?

I have learned some very important things over the past few years that I would love to share:

• Acceptance leads to success. Looking back on what used to be doesn't make things any easier, and it most certainly will not make you happy.
• Be your own advocate. If you need help, don't be afraid to let people know. There are so many resources for people who are visually impaired. It's truly an amazing experience when you connect with people who are dedicated to your success and well-being.
• Realize that things could be a lot worse. Honestly, I'm lucky to have Stargardt because, while I may lose an extent of my eyesight, I will never lose all of it. There are people out there who have suffered much worse and, amazingly, they have powered through it and come out on top. These people have been my greatest source of inspiration
• Never let others minimize your frustrations, challenges, or experiences.
• Pursue your interests and continue to live your life.
• Honor your sadness, frustration, and fear, but don't allow these emotions to consume you.

Thanks Jenna for sharing. You have been an amazing friend and support from the other side of the world!

Here are some of Jenna's beautiful artworks. I've previously shared some of her work make sure to also check it out here.

If you want to connect with Jenna on Facebook click here.

Let's talk anxiety

I've brought this issue up previously, and I think it's time it comes up again. Mental health is something I am extremely passionate about and anxiety is something I have been dealing with now for years.

I experience panic attacks. For those of you who don't know or have never had a panic attack, it is probably the worst feeling you could ever feel. There was a study done with people who had experienced both a heart attack and panic attacks which found that panic attacks were far more frightening and disabling! I hope this puts it into perspective a little! 

When I have a panic attack, it feels like extreme fear, and my 'flight or fight kicks in'. I'm usually more of a flighter, I get out of the situation as soon as possible to reduce the feeling, but this only feeds the panic and makes it worse causing me to avoid.. well life. 

The physical sensations can vary but include dizziness, trembling hands and legs, numbness in the extremities, dry mouth, rapid heart beat, shallow breathing, blurred vision, churning sensation in the belly, rapid bowel movements - pretty much everything in the body is affected. 

My attacks got even more severe when I had to stop driving. I had lost my independence. I was holding on to that last bit of control I had, I couldn't handle being a passenger in the car and was always the driver. I wasn't venturing far from my home at the time. After I realised it was too unsafe to continue to drive I knew I had to stop. At the time I also quit my job because of my vision issues and anxiety. I decided that it was time for me to start from scratch, and so I hit rock bottom.

Rock bottom felt like a big, dark hole that engulfed me from every direction. All the light was sucked out and I was stuck, too scared to move forward. I got to the point where I could no longer leave the house and even looking out the window brought on an overwhelming feeling of claustrophobia and fear. 

I knew what I had to do, I had to face it. At the time I was studying a subject called Behaviour Modification (awesome subject) and was learning about desensitization. My avoidance was feeding the panic monster within and the monster was winning. I didn't want it to win. I wanted my life back.

So I started small, I would walk down my driveway (which is like a street in itself) and start down my street. At first I would only get ten houses or so down before I started to feel panic, then I'd turn around and come back. I kept doing this until it got a little easier and then went further. 

I was overwhelmed by the traffic on the busy road at the end of my street. There was too much for my failing eyes to take in and process and everything was a blur to me. It made me feel nauseous. So I would sit on the bus stop on the main road and force myself to breath and take it all in. Slowly I became more comfortable with the rapid movement and the little of it I could process. 

Next was getting in a car with someone else at the wheel. Now I'm a HUGE control freak, if I could control the weather I would! It was hard enough just to get inside the car with someone let alone actually drive somewhere. It also comes down to trust. I had to trust someone else to be my eyes. Miss Control Freak had to give up her control! Let's just say there was a lot of tears, screaming and emotions flying around when I tried to do this with my friends and family. It started with going 100 metres down the street and coming back. Anyone I go with is now a pro u-turner (as we say in Australia, 'chuck a u-ey'). 

This is a slow process and I am by no way back to normal. It tests your patience, your courage, your bravery and your belief. I am slowly working my way back, and I want to emphasise that this process is slow and draining. It doesn't happen overnight. There are always times when I feel like I'm going backwards but I need to keep positive and push through. Everybody has bad days and I know I need not take it to heart. Just get up the next day and try again.

Unless you have been through a similar situation, it can be hard to truly understand what it's like. Time and time again I've been told to 'just get over it', 'try harder' and 'just do it'. If it was that easy do you not think I would?! Mental illness is a REAL illness, it's not for attention, it's not anyone's fault and it is just as disabling as a physical illness, if not worse. Most importantly, it should not be something that we are afraid to share, after all, in Australia 1 in 2 people will experience anxiety or depression in their lifetime. Support is the key.

Having a double whammy of illness is hard. But you're not alone. There is help available and most of all support. I get a lot of emails saying that my blog provides 'inspiration', but it's everybody else who inspires me to keep going and keep fighting. Community is one of the strongest forces to produce change and ensure happiness.

Let's continue to stick together to make a difference and keep living our amazing lives!