Inspirational Woman July 2012: Shireen Hafeez

A mother, wife, an advocate, an entrepreneur and a global student:  The Skinless Project is excited to introduce you to an all rounded inspirational woman, Shireen Hafeez.  She has lived all around the world, attended Purdue University to pursue her intellectual passions and become an advocate for individuals with hearing impairments after she navigated her own personal journey with her own son’s hearing impairment. She takes obstacles in her life as a route to educate others and chooses to think out of the box in every realm. We were delighted to chat with her and share the conversation with you.

You have a global perspective of the world. Tell us about how your childhood created this perspective.

The relationship that an individual’s childhood has with its environment impacts a crucial, yet subconscious, influence.  Due to the different cultures, societies, languages, customs, and social norms that are specific to every region I learned to adapt into those roles as a citizen of those communities. I also was able to form strong opinions of what I found acceptable or likeable in each one of them as well. My early experiences exposed me to prejudice and disapproval from others in which I realized that people outside of America might not always appreciate our presence or influence. That was specifically when I lived in Germany when I was in junior high. My first welcoming experience was in Frankfurt, Germany. My father and I needed to adjust our watches to the new time zone there. I had overheard an older gentleman clearly speaking English when I decided to ask him for the time. He deliberately shooed me off and was babbling as to pretend that he didn’t know English. Another jolting experience was when I had been followed by skinheads and had been called a “Yankee” which was considered a derogatory term for Americans. My eyes opened up very quickly in terms of the realities of certain places and times that left a very deep impression on me. My experience of living in Turkey was the opposite from that. Though English was not as commonplace, there was a certain warmth and charm that I felt. It wasn’t until I was much older that I was able to reflect back into those moments and put those into a rational perspective. My sister studied in Munich, Germany and had a very different experience than me- Its always relative.

What did you learn about other children and families while you were learning abroad?

I learned that all children are universally the same. Whether they were poor or rich they shared equally with me their love of fun and laughter. I remember being on a class field trip to the country side while living in Turkey and as soon as my class got off the bus all these barefoot children were chanting, “Michael Jackson! Michael Jackson!” That was the time he had soared to fame and was an international superstar. We were as enchanted by him as they were. I remember feeling that bond with them in terms of the awe we felt about this celebrity. They related to these American kids by using this popular culture icon in which their only English was his name. I have never forgotten that day.

You were married in your early twenties and simultaneously pursued your academic career at Purdue.  How did you find balance?

Finding balance between studying and family life was very challenging.  It took a village and a strong acceptance of imperfection. I decided to pick and choose my priorities and make it work.  My house being spotless was not at the top of my list. My children came first, my studies second. I was very lucky to have a great supportive spouse that lightened my load a great deal, but I was stretched thin. The remarkable thing was that I studied because I loved it so much that it wasn’t a chore as much as others might have perceived it to be.

Why did you choose Political Science and History?

Political Science, International Relations, and History were all things that helped me make sense of the world. It seemed natural to go that route because of my experiences and interests beforehand.

You have a child with a hearing impairment. Tell us about the process of diagnosis and how you embraced this?

The process of my son’s diagnosis for being hearing impaired occurred when his language had stifled around age three. He was given a hearing exam through a facility that had equipment, which detects the reception of sound waves in the ear. Unlike other hearing testing devices that are behavior based, this one was objective. Embracing the results was worse for my husband than for me. Unlike me, he has a lot of medical knowledge and his mid went to very scary places quickly. There are a lot of syndromes that are related to deafness that are often associated with blindness too. There was no words I could use to articulate the feeling of loss and sadness for my child. It was beyond grief.  It was through a strong will of getting through day by day to which I learned to not let myself fall into the hopeless cycle of grief. I had to make a decision to embrace the gifts he was given versus what was taken. We will never know the cause, but the organization I work for does compile data that can at least track the frequency of diagnosis.

You have now become an advocate for children with hearing impairments. Tell us about some of your work.

Much of my work is advocating for families of newly diagnosed babies and children. We help to provide unbiased information regarding communication choices so that families can make informed decisions. Unfortunately, there is a lot of division within the deaf community regarding the use of technology versus American Sign Language. Hands and Voices only cares about what works for the child. We try to bring families together for gatherings and do family conferences as well. I currently am working on an upcoming event in cooperation with my local Art Museum to showcase a deaf artist. It will be a way to spread awareness, gain more recognition as an organization, as well as promoting raw talent.

What advice would you give to mothers who find themselves in similar situations, dealing with the news their child had a physical or mental impairment?

I feel that the greatest support comes from other parents that have experienced similar circumstances.

Where are we as a country on helping children deal with hearing impairments? Are there more advances globally?

In terms of American state or federal laws helping children with hearing impairments, we are not as progressive as we should be. The Student Disability Act that is supposed to protect all children’s rights to have equal access to education can be tricky because not all school districts have the funds or interest to provide the special provisions that facilitate bridging the gap. That is where parents have to be their child’s greatest advocate and never accept less than what the child needs.  I have helped families battle the system many times. It’s a matter of understanding their rights to demand equal access to education that is protected under federal law. In terms of local or state law there are many variables that affect children’s quality of life .  Not all states have schools for the deaf which removes an important option for families that want to choose that route. For someone wanting their child to communicate with American Sign Language and doesn’t already know the language, cultural immersion is vital. In terms of children whose parents want them mainstreamed, assisted technology like hearing aids is another set of challenges. They are very costly averaging $2000-7,000. Currently there are approximately 20 states that have an insurance mandate that require insurance companies to cover hearing aids. The states that do not have the mandate can have the companies reject any such claim because they do not state it as a ‘medical condition.’ So if I lived in Colorado and my child was diagnosed and needed hearing aids, I would get coverage through my insurance company. If I lived in the state of Indiana, which I currently do, my claim to the insurance company would be denied. One of the drawbacks in my state is that Indiana does not have a professional legislator. In other words, they all have day jobs and do not fully devote themselves to the state. One of the state representatives that sat on the panel for the insurance committee was actually an Elvis impersonator.  I remember meeting him after I had to come to speak on behalf of a bill proposed to provide hearing aid coverage. I remember walking into the hall full of people feeling relieved that they were all there to put pressure on the committee to pass the HB1070, but it turns out that they were all lobbyists. The families were given less than 10 hours notice the night before to come and defend the bill at the Indiana State House that is why we were outnumbered 100 to 1.

You are now an entrepreneur with a new fashion line. Tell us how you started it?

Yes, I have co founded a fashion label called APARNA. The idea to start it was my friend and business partner Aparna Puri. We are both very creative people and thought that there were not enough options out in the market for woman looking for more mature, yet flattering garments. We started the company about two years ago in which we are now going to officially launch in the fall. The current collection is intended to be more on the classic modern side. We wanted to stay away from concepts that were too trendy. We created different pieces that play with shapes and different silhouettes, but always having the timeless element. The necklines aren’t plunging, and most of our pieces have some sort of sleeves. Several items in the collection are for the real everyday woman and intended to transition from day to evening. Our website is www.aparna.us.com

What resources can mothers go to help for hearing impairments?

Some Resources for mothers to go to for help regarding hearing impairments: www.handsandvoices.org , www.deafchildren.org , www.ncbegin.org , www.agbell.org , www.cdc.gov/ncbddd/edhi , www.nad.org , www.raisingdeafkids.org , www.sjid.org