36. Please Be More Profesional JKM KL

I found out that the welfare department (JKM) had issued a new identification card for the disabled. It is more advanced  like the MYKad and not just a laminated piece of paper like what I have. Thus I decided to change my card. I called the HQ to ask about the procedure and the documents I had to bring.

I was told to bring my old card for the disabled and a copy of it, a copy of my IC and go to the KL branch and have my photo taken there and it will be ready in a few days time.

So I went to the Welfare Department KL Branch. When I was there, I was told that I had to bring a hard copy of my photo and it will take a month or two to be ready. I asked the guy why is it so? He said it's the procedure. I asked again " Are you sure?' Yes, he replied.

 I told him him that I had called the HQ before I came  and I was told that the card will be ready in a few days time and the photo will be taken here because there is a digital camera here. He replied, oh yes we have but it has been broken since forever.  Again he asked me to bring the hard copy if i want to have the new card.

I left the office with disappointment. Well if the digital camera is broken why dont you fix it? It's the public property and to issued a card that take a month or two isn't it against the government policy to promote faster delivery system for the public?

There is no point in having smart technology if you do not have smart people to deliver it. Wouldn't it be much easier if you fix the digital camera and take the photo? You can just directly incorporated the photo on the card rather than taking a hard copy then scan it then incorporate it on the card?

35. Positive Vibes

Yesterday and today were the busiest day in my life since I left my job almost two years ago. First time I feel I have something to focus on in my life. Something beneficial for me and for other Muscular Dystrophy sufferers. I had tv interview.

In the afternoon, I met Aunty Rukiah who  is among the first people who follow my blog/page. She came down to KL  from  Penang attended a conference and wanted to see me. Today another tv interview.

Yesterday and today I woke up as early as 5am to get myself ready for a television interview on talkshow about my life battling with Muscular Dystrophy. My uncle and my aunty took me to the TV station and in the way we took Razleena, a friend of mine who is also the campaign manager for my project.

Razleena was talking about the  public awareness campaign that we are organising. Our first project is to raise fund through a photoshoot project called 1000 Faces:  Strike A Pose  in Defying Muscular Dystrophy to search for 1000 faces for our photo collage and I was talking about my personal experiences battling with the disease.

Today, I was again invited to the tv station to  join Francissca Peter on the talkshow and I talked about  the campaign, public perception regarding Muscular Dystrophy and how different-abled people like me live.

After i set up my Facebook page about living and dying with Muscular Dystrophy on facebbook page entitled Fazz Fadhilah vs Muscular Dystrophy, I felt the urge to organise a public awareness campaign on Muscular Dystrophy de to the lack of awareness among Malaysians.

I started to write emails and messages to some of the local celebrities including Malaysian Queen of Fundraising and a famous singer Francissca Peter who responded to my message on her Facebook. 

We communicated through facebook and we met for a meeting. During the meeting I told her about my disease and I was surprised that she was well versed about my disease. I am sure she has done her research before she met me. 

Fran agreed to help me for my awareness campaign and agreed to be the spoke person for my campaign.  I was touched by her kindness and willingness to help me on my campaign. 

We need to work hard and more aggresive for our media campaign to gain slot in the mainstream media to educate and advocate the public on Muscular Distrophy exclusively and other issues related to different-abled people.

From the meeting with Fran, Bibiana, Razleena, Aunty Rukiah and Yanti, I gained so much input with what to do my life and fill it with more positive opportunities to come. They gave me insight on brighter 2012 which is coming in a week time. Thank you all for your love and support.

34. Shopping for a Wheelchair

Getting the right feel before making the right choice

Upon hearing my need to get an electric wheelchair,  Aunty Nora and Uncle Dean together with Uncle Niko and Aunty Fairuz had helped me to get the wheelchair through their brother in laws who owns a foundation.

Last week we went to look around for a  suitable wheelchair for me. As usual, I did my research on the electric wheelchair and the suitable wheelchair for me is the one for indoor and outdoor use as I will be both inside and outside the home most of the time.

We went to a few rehab shops in Subang and KL and I tried a few electric wheelchairs but all of it are not suitable for my needs and the one that I wanted was out of stock and the shop had to order it from Taiwan and it will arrive within a month or two.

More choices to choose from

I can no longer walk using crutches. My legs become weak and not stable.   Sometimes, my legs drop without any warning. I have to use crutches and hold on to someone to walk. I walk slow and I get  exhausted easily even for a short walk.

Thinking about using a wheelchair in the near future, it saddened me and lead me into fear. Fear of embarrassment encapsule my emotions.

But when I took a deep breathe this morning and think, actually, getting worried and fear can get in the way of my life's journey. I have to get over these fears especially the fear of embarrassment. I told myself that I should not concern about walking differently or using wheelchair because when I stop worrying, I can get to my destiny much faster with laughters and a good stories I could pick up along the way.

Now, I am excited to get my electric wheelchair because by using wheelchair,  I do not look at it as progression of my  Muscular Dystrophy but it will be a moment of liberation. Finally, by using an electric wheelchair, I will be able to move around and about without the fear of falling, the risk of injury and physical exhaustion,

33. Kemudahan Pada Golongan OKU

KEISTIMEWAAN DAN KEMUDAHAN KEPADA GOLONGAN ORANG KURANG UPAYA

Sukan

Majlis Paralympik Malaysia telah ditubuhkan bagi menggalakkan sukan dan rekreasi di kalangan orang kurang upaya. Jabatan dan NGOs bersama-sama menganjur dan menggalakkan orang kurang upaya di dalam berbagai-bagai bidang sukan dan riadah. Kejohanan Sukan Paralympik Malaysia bagi Orang Kurang Upaya/ Jemputan ASEAN diadakan dua tahun sekali. Skim insentif bagi ahli-ahli sukan orang kurang upaya dan hadiah-hadiah berbentuk kewangan kepada pemenang atlit-atlit di Kejohanan-kejohanan Sukan Antarabangsa disediakan.

Kegiatan Kesenian dan Kebudayaan

Untuk menggalakkan orang kurang upaya menyertai berbagai-bagai kegiatan kesenian dan kebudayaan, satu kumpulan Kesenian Orang Kurang Upaya ditubuhkan dan satu tabung juga dilancarkan bagi memudahkan kumpulan ini menjalankan aktiviti dan latihan.

Kemudahan Pendidikan

Kementerian Pendidikan di bawah Jabatan Pendidikan Khas menyediakan kelas khas kepada kanak-kanak cacat pengelihatan, pendengaran dan bermasalah pembelajaran. Program pendidikan dijalankan di sekolah khas pendidikan dan melalui program integrated di sekolah biasa. Kerajaan juga mengecualikan bayaran pendaftaran kemasukan pelajar-pelajar kurang upaya pendengaran yang mengikuti latihan kemahiran di institusi-institusi pengajian di bawah kelolaan Kementerian pendidikan. Bagi Pelajar yang berjaya mereka akan mendapat elaun bulanan sebanyak RM300.00 sebulan.

Kemudahan Akses di Bangunan Awam

Satu Jawatankuasa telah ditubuhkan untuk memastikan orang kurang upaya ada akses tanpa halangan dalam menggunakan kemudahan-kemudahan awam. Akses orang kurang upaya kepada kemudahan-kemudahan dalam dan luar bangunan telah dimasukkan dalam pindaan kepada Undang-undang Kecil Bangunan Seragam 1984.

Dalam hubungan ini Jabatan Kebajikan Masyarakat telah mengambil inisiatif dan memainkan peranan dalam menggalakkan berbagai kemudahan diwujudkan bagi membolehkan mereka yang kurang upaya bergerak bebas. Satu daripada pencapaian ini ialah penubuhan Jawatankuasa Teknikal yang Urusetianya ialah SIRIM telah merangka “ Kod Amalan Akses Bagi Orang Kurang Upaya Ke Bangunan Awam” yang mana telah menghasilkan pindaan Undang-Undang Kecil Bangunan Seragam 1984 berkaitan dengan kehendak-kehendak bangunan untuk orang kurang upaya di mana bangunan baru diwajibkan mempunyai kemudahan akses kepada orang kurang upaya. Antaranya termasuklah “ram” dan “railings”, laluan yang bersesuaian dengan kerusi roda, lif khas dengan reka bentuk yang sesuai, tempat letak kereta, tandas khas dan sebagainya.

Kemudahan Dan Galakan Pelepasan Cukai

Kerajaan juga memperluaskan potongan cukai berganda dalam tahun 1981 kepada majikan-majikan mengambil pekerja kurang upaya dan dalam tahun 1991. Kerajaan pula menambahkan bagi pelepasan pengecualian cukai bagi ibubapa yang mempunyai anak kurang upaya di bawah umur 18 tahun. Kerajaan juga memberi ribet cukai kepada pembayar cukai bagi membeli alat-alat khas bagi kegunaan sendiri atau kegunaan anak dan ibubapa yang kurang upaya;

Sebagai galakan berterusan bagi memelihara orang kurang upaya dan sebagai pelepasan tambahan kepada potongan diri RM5,000 dan potongan untuk isteri RM3,000, Kerajaan telah meluluskan pelepasan tambahan sebanyak RM5,000 diberi kepada pembayar cukai yang kurang upaya dan sebanyak RM2,500 lagi kepada pasangan yang kurang upaya mulai tahun 1995.

Kemudahan Pengangkutan Awam

Jabatan sentiasa menggalakkan syarikat-syarikat pengangkutan supaya memberi tambang konsesi kepada orang kurang upaya. Sehingga kini terdapat beberapa buah syarikat pengangkutan telah memberi insentif pengangkutan kepada golongan kurang upaya. Antaranya Sistem Penerbangan Malaysia memberi tambang murah sehingga 50% bagi penerbangan dalam negeri, Keretapi Tanah Melayu memberi tambang konsesi sehingga 50% bagi semua perjalanan bagi semua kelas, Syarikat bas TRANSNASIONAL memberi konsesi 50% daripada harga tambang dan PUTRA-LRT juga telah memberi konsesi tambang kepada golongan kurang upaya.

Pengecualian Bayaran Rawatan Perubatan

Orang kurang upaya dikecualikan daripada bayaran rawatan di Hospital Kerajaan termasuk bayaran wad kelas tiga, bayaran pakar dan ubat-ubatan.

Pengecualian Bayaran Dokumen Perjalanan

Jabatan Imigresen mengecualikan bayaran ke atas perkhidmatan menyedia dan memproses dokumen perjalanan (passport Antarabangsa) kepada golongan kurang upaya.

Kemudahan Peluang Pekerjaan

Komitmen kerajaan untuk membuka peluang pekerjaan kepada golongan kurang upaya terbukti melalui Pekeliling Perkhidmatan Bil. 10/1988 yang telah dikeluarkan dimana kouta 1% peluang pekerjaan di sektor awam diperuntukkan kepada golongan orang kurang upaya.

Bagi Sektor Swasta, Jawatankuasa Penggalakan Pengajian Orang Cacat Di Sektor Swasta telah ditubuhkan dalam tahun 1990 di bawah Jabatan Buroh Semenanjung Malaysia telah mewujudkan Kod Amalan Penggajian Orang Kurang Upaya di Sektor Swasta yang merupakan suatu garis panduan kepada agensi kerajaan, majikan, pertubuhan majikan, pekerja, kesatuan sekerja dan pertubuhan orang kurang upaya serta orang kurang kurang upaya sendiri untuk pendaftaran dan penempatan kerja orang kurang upaya bekerja di sektor swasta.

Bagi orang kurang upaya, mereka boleh membuat pendaftaran di mana-mana pejabat buruh di negeri dan daerah )

Kemudahan Membeli Kereta Dan Motorsikal Nasional

Kerajaan memberi pengecualian cukai jualan sebanyak 50% ke atas pembelian kereta atau motorsikal nasional bagi orang kurang upaya yang berkeupayaan memandu dan tidak berkeupayaan memandu.

Bagi orang kurang upaya yang berkeupayaan memandu, setiap permohonan mestilah disertakan dokumen berikut:-

• Kad Kenal Diri Orang Kurang Upaya;
• Kad Pengenalan;
• Lesen Memandu yang sah;
• Maklumat Kenderaan - Model, No.Enjin, No.Chasis dll.

Bagi golongan orang kurang upaya yang tidak berkeupayaan memandu, mereka boleh mendapat kemudahan tersebut dengan syarat Pihak kedua ( Ibubapa/isteri) boleh memandu bagi pihak mereka. Setiap , permohonan mestilah disertakan dolumen berikut:-

• Lesen memandu - pihak kedua;
• Kad Pengenalan - pihak kedua;
• Maklumat yang menyokong hubungan antara penama dan pihak kedua;
• Kad Pengenalan;
• Kad Pengenalan OKU;
• Maklumat Kenderaan – Model, No.Enjin, No.Chasis dll.

Kemudahan Alat Ganti Orang Kurang Upaya

Kerajaan memberi pengecualian duti impot dan cukai jualan ke atas semua peralatan direka khas untuk kegunaan orang kurang upaya.

Pencen Terbitan

Kerajaan melalui JPA menyediakan pencen terbitan kepada anak/tanggungan penjawat awam yang meninggal dunia.

Kemudahan Mendapat Latihan dan Pemulihan

Jabatan Kebajikan Masyarakat menyediakan program latihan kepada kanak-kanak kurang upaya dengan menyediakan program latihan kemahiran dan pemulihan diri di Institusi-institusi Jabatan. Buat masa ini perkhidmatan yang disediakan oleh Jabatan ini kepada kategori kurang upaya anggota dan akal (bermasalah pembelajaran) sahaja.

Kemudahan Geran Pelancaran

Jabatan Kebajikan Masyarakat juga membantu golongan kurang upaya yang berpendapatan kecil atau yang ingin menjalankan perniagaan kecil dengan menyediakan peruntukkan geran pelancaran berkadar maksimum RM2,000

Sumbangan Kepada Program-Program OKU

Jabatan menggalakkan penyertaan aktif dan sumbangan daripada sektor swasta/ korporat untuk memainkan peranan yang lebih besar dan positif bagi kebajikan orang kurang upaya selaras dengan hasrat Kerajaan untuk menuju ke arah masyarakat penyayang menghadapi Wawasan 2020 dan menepati Dasar Kebajikan Masyarakat Negara.

Kemudahan Telekom

Syarikat Telekom Malaysia telah menyediakan insentif/kemudahan kepada golongan orang kurang upaya seperti berikut:-

• Bayaran Sewa bulanan di kecualikan kepada golongan kurang upaya.
• Panggilan 103 (operator) tidak dikenakan sebarang caj
• Menyediakan panggilan menunggu atau panggilan pindahan secara percuma.

Bagi orang kurang upaya berumur 19 tahun dan ke atas mereka layak memohon menggunakan maklumat sendiri dan bagi mereka berumur 18 tahun dan ke bawah mereka juga boleh memohon perkhidmatan bagi pihak keluarga mengikut syarat-syarat dan peraturan yang ditetapkan oleh pihak STMB.

Takaful Malaysia Berhad

Menyediakan Insuran(Perlindungan) bagi OKU yang merangkumi Perlindungan bagi:-

• Kemalangan;
• Kematian - urusan pengkebumian;
• Keilapan Kekal (kurang upaya/disability) akibat penyakit;
• Keilapan Kekal akibat kemalangan;
• Perbelanjaan perubatan kecederaan akibat kemalangan

Syarat-syarat permohonan:

• Berdaftar dengan Jabatan Kebajikan Masyarakat;
• Berdaftar dengan mana-mana persatuan.

32. Usher's Skills To make Patron's Experience Pleasant

Last Sunday I was invited by friends to watch a play/musical by Petronas Performing Arts Group at the Dewan Bandaraya KL Building (Kuala Lumpur City Hall Building). As I had never been  to the auditorium inside the building so I called DBKL to ask about facilities  for different-abled people like me to watch the play.
 A guy answered my called and he tried to give me another number but put me on hold for  20 minutes. I hung up the phone and tried calling PPAG and trying to inform them about my condition.  No one answered the phone.

So, I told myself maybe when I got there I could ask the usher to show me where are the ramps, where's the lift, are there any special seating arrangements as I couldn't climb the stairs so that I could enter the performing hall without facing any difficulty.

people on wheel could use the same level to the auditorium

When I got there, we parked the car at the basement and took a lift to the Auditorium and the lift took us to the lobby of the city council and the auditorium was on the left wing next to the city hall lobby, there were a few guys at the counter looking at me going down steps to the foyer and I had to walk to the next wing and climbed the steps again.

Actually the city hall lobby and the  auditorium was on adjoining floor on entrance level  without going through the steps. That was my first time there and I didn't know, and how I wish those city council staff  who looked at me had told me about it.

stairs to a cafe, no ramp on the side

As I was early, I was waiting for my friends to arrive, I decided to have something to drink and munch at the cafe on the right wing of the city council building as i exited, again I am faced with another set of steps just to get to the cafe.

When all my friends had arrived, I went to the lobby of the  auditorium without going down the steps at the foyer but using the entrance level.

When we reached at the lobby, I saw stairs leading to the performing hall and there were no usher at the lobby except for two persons with laptops giving out tickets. I told them that I am using crutches and cant climbed the stair and asked them where was the lift to the performing hall.

Stairs but usher failed to guide can use same level w/out stairs

With no interest  look on their face to entertain my question, the girl told me that I had to climb the stairs but I told her that this is the city hall council building and how can they not afford to have a lift? they must have lift for me to get to the performing hall.
She kept quiet and looking clueless. Im not sure whether she is a DBKL staff or Petronas staff. By this time, a friend of mine called my name and showed me the way to the lift. We entered the lift and got on the upper floor, the lift didn't stop at the lower floor seating of the hall but on the upper floor seating.
 From the lift to the performing hall on the upper hall I saw there was ramp for wheelchair leading to the upper floor of the auditorium but my ticket is on the lower floor. So we had to go down using stairs to the performing hall, luckily, i still can use my leg to go down the stairs  and having difficulty climbing stairs.

Stairs to the performing hall

As I entered the performing hall, I was faced with another obstacle, - stairs leading to the inside of the performing hall. slowly, I lift my leg with my hand and put it on the steps one at a time, As I was doing that I was holding the line as there were few people behind me, I stopped and I apologised to them and allow them to go first.

By this time the ushers (im not sure if they were  from DBKL or Petronas,)  I think there were 5 or 6 of them just stood on top of the final stair looking at me , not knowing what to do. When we reached  inside the hall, one of the ushers told me to go to the nearest seat but the nearest seat I had to climb  few steps. Didn't he look at how I was struggling climbing the stairs and now wanted me to climb another set of steps?

ramp on the upper floor seating

I saw a few empty seats down from where I stood and I asked him if it's ok if we sat there as I couldn't climbed the stairs and I walked towards the seat and with sweats running on my forehead, face and body,  I was enjoying the play/musical that evening. When the play ended, everyone got up from their seats and climbing the low steps to the entrance where we came in. I saw there was an exit door down the hall but it was closed. I told myself  that I was not going to climb the stairs to go out but I was determined to use the closed exit down the hall.  When she saw me walking to the exit, the usher walked towards the exit and she helped to open the door for me and from there I was glad there was no steps just a flat ground towards the entrance of the hall. But I still had to go down the steps to the lobby.

But I was seated on the lower floor, going down

As I was leaving the building, I saw there was a ramp from the outside of the building leading to the lobby. There was some sort of facilities for different-abled people like me but there was lack of signage and lack of professionalism among the ushers in dealing with people like me who is using crutches. I wonder how would they deal if there were patrons on wheelchair coming for the show? Are the usher well prepared?

No matter where the venue is, an usher must do a bit of research on the surrounding of the venue/building, the facilities available on the venue, and able to provide information for people using crutches or on wheelchair. Don't just stand there and cluttered the space at the entrance of performing hall.

The Roles of an Usher

Stairs to the performing hall

 I was not asking for a treatment like a king but it would be helpful if there is an usher could provide me with the correct information or just to tell me where to get the lift and to get around without me facing difficulty to enjoy the show.

Usher should not just wait in front of the door of the performance hall but at the lobby also, as that is the first point of contact with the patrons. Perhaps those ushers could learn from other international performing halls on how to manage patrons  who are coming to watch the show.


Their roles are not just to greet patrons or assist patrons in finding their assigned seats but more than that especially attending different -abled person like me. What would  the ushers do when a different-abled people like me using crutches or on wheelchair enters the lobb


These are the  international standard procedures applied by most Performing House around the world.

1. Always present a pleasant demeanor. Smile! Make the patron feel

welcome.

2. Make any requests in a polite and calm voice. Address patrons as sir or

ma’am. Always say please and thank you.

Patron on Wheelchair

▪Position: Lower Lobby

▪When handicapped patrons enter the lobby, ask to see their tickets. Look at them

carefully.

▪Wheelchair seating/Orchestra: 

 Chairs will be placed in the rows and numbered if someone is attending with them. Do not

remove the chairs! Patrons must be escorted to their seats through the access

hallways . Remember to assist by holding the doors for them as they pass. 

▪If an unexpected wheelchair patron arrives with a ticket for a regular seat but

wants to move to a handicapped space, check with the House Manager to see if a

space is available.

▪Often, a wheelchair patron will get out of their chair to sit in a regular seat. Make

sure the wheelchair is out of the way and does not pose a fire hazard. Examples:

Cloak Room, back of the Orchestra against the wall, in front of left and right sides

of stage, etc. Remember: the wheelchair cannot obstruct the pat of patrons in any

way.

▪Advise handicapped patrons to remain in place after the show, and you will come

to assist them. If you seat a patron, it is your responsibility to help him/her exit the

theatre. If you cannot help at that time or have too many patrons to help, enlist the

assistance of one or more ushers.

▪Once you have seated a patron, be sure to get them a program, deposit their tickets

in the usher stand and then quickly return to the lobby. Someone may be waiting

on you!

▪If there is an abundance of ushers, several may be assigned to handicapped

assistance.

▪Always be ready to help a patron!

▪Do not hold up the line by participating in long conversations with patrons.

▪It is okay to socialize with one another, but do not leave your post, do not distract

each other, and do not neglect patron

For most performances, late comers must stay outside the doors of the

performance hall until a point when they can be led to their seat during applause or

at an appropriate pause in the performance. For some performances, especially

dance recitals, this rule will not be enforced.

Despite the unpleasant treatment I received from the ushers, I enjoyed the show. Kudos to Petronas Performing Arts Group for preserving the our cultural heritage for younger generation to appreciate.

31. High hope on Bright Future

Being with the orphans regardless of their race and religion always make my heart mellow because either they have lost their parents or they have been deprived of a parental care due to many reasons. Spending time with the orphans on Saturday afternoon was great.

I was invited by a friend to give a talk and to motivate the children to excel in their studies and to instil confidence in themselves that they can change their lives for brighter future through education.

I was sharing my experiences with them on how I struggles with Muscular Dystrophy and still doing what I love, still walking and meet people, still social attending play and movies and never loose hope.

After awhile I pass the talk to raizan on the importance of learning English and other foreign language such as Japanese. raizan speaks fluent Japanese. He also  brought Ken, his Japanese friend to visit the orphanage house.

We can achieve so many things in life if we set our goal dan stay focus in what we do. I hope these children will not feel that they are defeated by their condition, not having parental love but to make a change in life.

Almost every weekend Chef Ricky will visit the orphanage house and cook lunch for the kids. Coming from the orphanage house himself, he understand what the children going through and they need support from the society to lift their spirits.

30. Welcome On Board Leena!

Leena Rindu came to meet me and to do the photoshoot to support my 1000 Faces: Strike a Pose, Defying Muscle Disease (In Support For Fazz Fadhilah vs Muscular Dystrophy)

We had lunch together near my studio and reminiscing old memories when we were college mates and how we always organised events during our college  days together with other college friends including Meera. At that time, I was the President of the Mass Comm Club at my college.

By the time I continued my study in Australia I have lost touch with Leena until 2007.  We kept in touch thru SMS and emails then we lost touch again until recently. But today was the first time I met her after 9 years. Now she is a Corporate Consultant dealing with foreign companies that wish to set up business in this country.

Leena was pleased to see me and so was I.  A few months ago, after she found out about me suffering from Muscular Dystrophy, she did her own research on the internet about MD. She kind of have the idea what I am going through. I told her more about MD and how it affected my daily life.

Leena did not just came for the photo shoot but she came with abundance of ideas on how to expand the campaign and how to reach broader audience. I like her ideas and we had a brain storming session together with Azman. Razleena could be my media campaign manager to help running this project. Welcome on board Razleena.

29. '1000 Faces - Strike a Post, Defying Muscle Disease In Support of Fazz Fadhilah vs Muscular Dystrophy Campaign'

Helping out at the  studio with the campaign

After the fall on Wednesday morning while walking to the studio from my apartment, (it left a few cuts and bruises on my ankle, knee and elbow), my friend Azman who owns a photography suggested that I use a wheelchair rather than the crutches that I am using now  to help me to move around.

I need a motorised wheelchair as my hands are not strong anymore to push the wheel of a conventional wheelchair and it causes alot of money. Azman came up with an idea. His ideas was to ask as many people as possible to come to his studio take a potraiture photoshoot with  some fees /contributions and the fees/contributions will help to buy me a wheelchair and for my medication.

I love his idea and I developed his idea into an awareness campaign and to set up a fund which I called - '1000 Faces - Strike a Post, Defying Muscle Disease In Support of Fazz Fadhilah vs Muscular Dystrophy'.


The Aim of the campaign:

1, help to buy a motorised wheelchair for myself and for another MD sufferer Ismail Clement who is in need of a new wheelchair.
2. to pay for medication expenses,
3. to build ramps to facilitate my movement around the house,
4. to help other Muscular Distropohy sufferers and to set up support group to maintain the highest      possible quality of time as long as our lives remain.
5. to print brochures and pamphlets to raise public awareness on this disease.
6. It will also help to lobby for better policies in this country regarding Muscular Dystrophy.

The public can help the “1000 Faces: Strike a Pose Defying Muscle Disease” campaign by having a potrait photoshoot of themselves at at Azman's studio with the donation/contribution starts from RM50 for each potrait. With each photoshoot, the studio will provide a compact dics of the photoshoot and a A4 size photo print.

For corporate, if they have more than 10 person to do the photoshoot, Azman's team will go to their location of office for the photoshoot.
All proceeds will go to Fazz Fadhilah vs Muscular Dystrophy fund.

28. Keep on Falling

Living with Muscular Dystrophy I learn pretty quickly that falling is just something I have to get use to and at times it does lead to some embarrassing situations.

I still remember when me and a few of my friends were walking to the car that was parked outside of the condominium and there was uneven ground resulting in my leg giving out and me falling. This happened so quickly. I fell flat on the ground and landed face down almost broke my nose but the gap between  the covered drain had saved my nose. I was knocked out for s split second. I felt dizzy for awhile and my friends were shocked. I tried to got up and the first thing I checked was my nose. I asked them whether my nose still straight  but they burst in laughing. I was laughing too.

That afternoon after we had lunch, I parked my car about 500 metres from the office entrance and it was about to rain. My colleagues had run to the  foyer while I was walking towards the building and the foyer when a strong wind hit me and I was blown off course and the next thing I know I was walking right into a window and I stopped and frozen myself there calling one of my colleagues to hold me and bring me into the office lobby.

I am not embarrass, I am feeling different and self conscious. I am aware that I am different. walking differently, climbing the stairs differently.

Nowadays I adopt more positive ways of thinking. Most people are worrying about themselves most of the time, not me. Whenever people look at me differently it’s because they’re probably seeing something new to them. As humans we tend to inspect new things with curiosity. Would I rather be out and about right now or stuck at home, afraid of what people think?

27. Step By Step

That night after I had dinner  Raizan's mother I plan to visit a friend, Azmi for a coffee. I asked Raizan if he could come and accompany me to Azmi's house. He agreed to follow me. When we arrived, little that I know Azmi stays in a walk up apartment.

I told myself I could climb the steps slowly, step by step and eventually I will be on the forth floor. The steps however were small and steep. So I climbed the first set of the steps while Raizan was behind me. He was holding my crutches while me, one hand on the railing, while the other hand tried to lift my legs, one at a time.

After I reached the first set of the steps, Raizan offered to carry me, I was reluctant at first  and asked him to go up first at meet me at Azmi's door. Because to me it was not fair for him to wait for me to climb the stairs.

Eventually, he carried me up to the forth floor and by the time we reached Azmi's apartment, Raizan was catching his breath and I felt really bad. We could have just gone home and he didnt have to carry me.
Azmi greeted us at the door and was shocked that Raizan carried me up all the way. While having coffee, Azmi told me that a friend like Raizan is hard to find and I should appreciate the friendship I have with him.

I do appreciate our friendship, I do feel comfortable hanging out with him, in fact I love him like my own brother. He is part of my family now. I do think I could not return his favour, compassion and what he has done to help me. Thank you dear best friend.

26. Aqua Theraphy

These days in order to strengthen my muscle especially my legs muscle, I do aquatheraphy.
With the help of a friend, I would walk in the swimming pool for an hour or two. From one end to another end I would walk slowly holding the edge of the pool.

At first, the walk seem very slow and hard as I have to push my legs against the water. Sometimes I would fall in the water and my friend, Raizan would supervise my aqua theraphy sessions as he walks by my side so that I won't fall and drown.

Raizan would do his swimming regime as I walk against the water and he would wait for me at the other end and gives moral support as I struggle trying to get to the other end.

The challenging part is when I want to get out of the pool. I can not clim the ladder. I can not push myself out of the pool. Thus Raizan had to carry me out of the pool, put me on the pavement by the pool. He came out from the pool and carry me to the bench. That's is our routine when coming out of the pool.

The aqua theraphy helps to strengthen my muscles as the viscocity of the water provides an excellent source of resistance which allows muscle strengthening without the need of weight.

At some point, I feel my legs alot lighter when climbing the stairs but still need the help of others to climb he stair by holding their arms. I still can walk on my own as I keep falling without the help of crutches.

Raizan and I have been friends since early this year and he always been supportive and help me  with the aqua theraphy and help me to move around since I  have limited mobility and cannot drive anymore.

25. Kenangan Bersama Pood

Sebulan sebelum Arwah meninggal kami bertemu di Open house hari Raya. Tak sangka itu kali terakhir bertemu Pood.

Disember 2003, aku bercuti kembali ke Malaysia setelah hampir setahun study di Australia. Rindu rasanya pada kawan kawan di KL. Antara orang pertama yang aku contact apabila sampai di KL adalah Ross. Ketika itu Ross menetap berhampiran Mines, kawasan perumahan di seberang jalan Mines. Ross menjemput aku ke rumahnya, ketka itu pertama kali aku menjejak kaki ke area situ, sampai jer ke stesen komuter Sungai Besi aku naik teksi. Habis diketuknya aku dengan tambang RM10, taklah jauh mane pun, dah tu berhenti seberang jalan, dah aku kene melintas jalan besar kat shell near mines tu untuk ke rumah Ross.

Sampai sampai ke rumah Ross ( tak ingat tingkat berapa, Ross masa tu stay dgn Azmi and Sarah) die tengah menumbuk sambal belacan buat lauk untuk lunch. Selesai dia masak kami sama sama lunch. Malam masih lagi melepak kat umah tu, tengah malam tetiba pintu umah terbuaka, masa tu Pood baru balik keje, masa tu lah first time jumpe Pood. Dia nampak letih, setelah bertegur sapa dan berkenalan Pood masuk bilik. Aku dan Ross sambung borak, lepak dan tengok TV kat depan.

Esoknya aku berbual bual dengan Pood dan bermula saat itu kami berkawan. Setiap kali balik KL untuk cuti semester, aku akan lepak dengan Pood dan Ross dan beberapa rakan lain. Kami jadi lebih akrab selepas aku tamat study dan pindah tinggal di Tasek Height dan kami berjiran. Pood suka makan di Secret Recipe dan selalu mengajak aku untuk makan di sana baik untuk lunch atau dinner. Selal kami akan malan di outlet K avenue.

Pood juga suka mengumpul DVD filem pelbagai genre, selalu temankan dia beli DVD dan kadang kadang dia akan belanja aku beli CD lagu, seronok sangat masa tu sebab Pood hadiahkan CD, ya lah masa tu dok menganggur belum dapat keje lagi. Aku selalu juga masa tu lepak rumah dia menonton DVD, masa tu dia baru beli TV yang besar 50 inci (masa tu belum ade flat screen plasma TV belum muncul kalau ade pun harga masa lebih RM15k).

Kami juga selalu dinner sama di sekitar kawasan rumah kami. Pood juga selalu temankan aku pegi dinner or lunch di rumah Aunty Nora aku. Dia selalu pangil aunty Nora as Aunty Fran sebab aunty Nora ada iras iras penyanyi Francisca Peter. Kami selalu joke pasal tu.

Satu  lagi kenangan bersama Pood ialah kami pernah ke Melaka menaiki bas semata-mata nak makan masak asam pedas dan kembali ke KL semula sebelum senja hari yang sama. 

Semua itu kini tinggal kenangan, Pood seorang yang dsenangi ramai, dia suka senyum, aku tak pernah tengok dia marah-marah or meninggi suara, hormat orang tua dan pandai bergaul. Aku sangat senang berkawan dengan Pood. Aku amat bersykur kerana diberikan peluang untuk mengenali, mendekati dan bersahabat dengan Pood. Sedih dan sebak lagi dengan berita yang sangat mengejutkan ini. Kita hanya mampu merancang tetapi ajal di tangan Allah. Bila bila masa Dia akan menemput kita tak kira tua atau muda.

24. Lost of a dear friend

It has been awhile since I last posted an entry to this blog. I have been busy socialising, doing my  aqua theraphy, meeting new friends and lost a friend. A dear friend of mine passed away on  29 Oct 2011 and it affected me greatly.

Shahrul Annuar Ibrahim or Pood as close friends called him, was strong healthy and active and no one would expect him to . His untimely death came as a shock to me as we were close. When someone close to you die, it makes me realised life is short and how vulnerable life is.

I always thought, I would die first before Pood but God loves him and took him away from me. God must have a better plan for him as well as for me. His death serves as a wake up for me to be more generous to other people and spread love to our loved ones as we dont know when they will go or how soon you will go.

We grow up thinking that we've got everything figured out. We think we're fully in control over everything that happens. The truth is , the control we think we have is really an illusion. Shadows. The only thing life really promises us is pain t is up to us to create the joy.


When you were born, you were crying and everyone around you was smiling. You had lived your life that when you passed away, you are the one who smiling and everyone around you is crying - al least you made me cry dear friend.

21. Policy

At first, I was reluctant to go because I thought it was just another boring get to know session with the Disable People. Yanti had emailed me the invitation that evening. Furthermore I had to arrange transport to get to the meeting and it was kinda late for that. But later that night I thought it would be good for me getting to know other people who are experiencing disbilities and I could write something from their experiences, so I called Mak Teh and asked her if she and Pak Teh could send me there and they were gladly to help me.

As I entered the meeting room, Prof. Datuk Dr Zaliha Omar , special aide to the Minister was taking down particulars from one of the participants and Yanti greeted me, I sat next to her and I whispered sorry to her and I didnt want to interrupt the whole discussion.

They were seven of us but I didnt remember all their names they was Alia, who is partly blind and have difficulty to walk, Khairul Amilin (deaf and cant talk, and happened to stay in the same neighbourhood as me) Humprey (nerve problem), Nurul (Hearing problem), Maheswaran (amputated hand), and a shy girl from Cheras with hearing problem.

Datuk Dr Zaliha Omar asks one of the participants

Although they are not perfect physically but most of them at least have a diploma in various fields – Masters in HR, Bachelor in I.T, International Business, Diploma in Risk management, Dip. In Fashion design, dip. In hotel management.

The dialogue session was held to help the government to form a policy in order to help the Disable People to find the suitable job in the job market be it in the public service or the private sector and to accommodate our disabilities at the working environment.

We also shared our frustration, the stigma and discriminations towards us by certain quarters in the society when we are looking for a job in the very competitive job market out there so that the government would know it hasnt been easy for us to find a job although we have qualifications.

When it was my turn to introduce myself, Datuk Zaliha asked in details about my conditions. She seemed to know a lot about Muscular Dystrophy. She asked about my diagnosis, medication, physiotheraphy and about my education background and work experience.

Hafiz relating his experience as a blind worker

So everyone was sharing their side of the stories and how they overcome their challenges they faced and keep trying harder to pursue their dream and their struggle in finding jobs. I was so glad to have attended the session as I get to know them and listening to their experiences and struggles that they are facing in life.

After the dialogue session ended, we were served with lunch and I was sitting next to Hafiz one of the department's staff who is blind. I told Hafiz about my research on MD and the lack of support group and how I set up the FaceBook page about Fazz Fadhilah vs Muscular Dystrophy. Suddenly Datuk Zaliha overheard my conversation came up to me and chatted to me, she told me 15 years ago she was the president of Muscular Dystrophy. Before she left she gave a pat on my shoulder and gave me her email address and bade farewell.

Yanti, Me and Azib

After the session, Yanti invited me to her office to help me to register online for public service works. I followed her. With the help of her colleague, Azid we went down to her office. Azid is a nice chap, he helped me to go to the toilet and helped serve lunch to me.

Yanti told me about her struggles, her childhood and her determination to excel in education and to get a good job. Because of her condition, she only know how to write and read at the age of 12 but that did not stop her from obtaining her degree. I was touched by her stories and proud of what she has achieved in life. while we were talking the other staff said hi to me, probably they recognised me from the session and they dropped by at Yant'is workstation and chatted to me. They were all so nice to me. When my aunty arrived to pick me up, Yanti and Azib accompanied me to entrance. Well, I am glad to be there, not only I could voiced out my concern ( and now people like me Disable are heard directly by the minister of course through her special aide) and I have made few new friends.  

20. Well Wishes

Since  set up the Fazz Fadhilah vs Muscular Dystrophy page to share my experience living and dying with that fatal disease, I have received a lot of well wishes from old friends I have nor met for so long, existing friends who always been supportive, new friends  whom I forged friendships on the internet,

I would like to thank all of you for remembering me, keeping me in your prayers and last for not least thank you for the friendship you have given me through your love, understanding ,support, compassion I will keep adding the wishes in this entry until I cant add them anymore.

Abu Musa Isa : Fuzz ko kat mana skrg? I read ur blog and info on MND sgt2 tersentuh degn entry ko. Well I cried sbb neglect our frienship. I wasnt there. Niswa n me plan to pay you a visit. I did cry, U can check with my wife, Niswa is so worried about you. Im in JB now, next weekm we will visit you and please give me your full address.

Mazlin Norman : Fadzli..i'm sincerely saddened to hear/read about the misery you are going through. You are such a nice person that you don't deserve to go through all these but hey, this is what happens in life.. But i'm glad that you're a fighter, i'm so glad that you are doing so much to also help others with information... you are a true hero, my friend!! I will always doa and pray for you, Fadzli.. take care...

Mursyida Mohiyaddin: We haven't talk for a long time, ya. Hope you are well.
Despite the physical obstacle, I am glad you are now sharing your experience with your friends. Please know that you are always in my thoughts. May God give you the strength to tackle life courageously. When things get hard to bear, hold on to your positive attitude.
I'm happy to see you have wonderful family and friends who are very caring and supportive. God bless them all. Please don't be a stranger. Keep in touch whenever you can. Take care ... God bless.

Saharuddin  Mohd Musthafa : My doa will always be with you, Fuzz. Be strong ok, my friend?

Rukiah Hanoum : Salam, May Allah swt give u the strongest of Iman

Eja ul Haq: I myself am  suffering from MG (Myasthenia Gravis) something got to do with muscles 

and its rare disease either. Honestly you motivate me brother.. :) And i'm not alone!!

Ogy Ahmad Daud: Salam Fazz, Saya amat2 mengkagumi semangat anda... U are a TRUE HERO. Will 


support you and my prayers are with you, Salam hormat K.Ogy




Francissca Peter: You are very brave and that is important so that you maybe the voice for those who 


are going that too. Hugs and you are in my thought and prayers



Richard Ariefiandy : Semangat Fuzzy


Nora Hafneh : Fight and win Fuzzie...Praying that Allah will give you strength and patience to

overcome the challenges you may face, my dear old friend...Amin Ya rabbal Alamin...I'm proud of

you  that you have the courage to share wth us :) Take care


Shah Nizam Omar: Sabar ya Fuzz


Nurhayati Mohamad Nor:  Am sorry to hear about that, but I know it'll make you strong and a better

man.


Dollah Jaafar: Fazz, semoga usaha dan niat yang mulia ini diberkati Allah swt. Dan di hari Jumaat

yang mulia ini abang berdoa akan kesejahteraan Fazz...  Amin


Kamarul Idham: Teruskan hidup dengan kekuatan hati dan fikiran. Itu sebenarnya yang memberi

kekuatan